July 13, 2012

On November 29, 2007, I suffered a devastating stroke.  I was life-lighted from Davis hospital to the University of Utah where they said there was nothing they could do for me.  Miraculously, 3 Doctors  got together and came up with an experimental procedure that saved my life.  That day changed my life.  
My sister took my baby girl, who was only days old, and cared for and loved her for the next year. My in laws moved from their home 5 hours away, into my home to love my boys through it all.
 I lost my ability to swallow so I had a tube placed into my stomach to feed me.  I couldn’t breathe on my own so I had a trach.  My face was permanently paralyzed so speaking is next to impossible and I need a gold weight in my eyelid just to blink.  In the hospital, I was unable to talk or write so I had to use sign language.  I am unable to use my right hand and have limited use of my left.  I had a muscle contracture in my leg that made my toe point downward, like a Barbie.  I was unable to move, let alone walk. I remember the first time I rolled on my side, two nurses were there and cheered and were nearly in tears. For a long time, I was in a wheel chair, with a feeding tube, totally helpless and relied heavily on others for everything. Yes, everything. Due to where the stroke damaged my brain, medically that was as far as I was expected to progress. 
I had very intense therapy while in the hospital and my stay there lasted 3 ½ months and included numerous stays in ICU, IMCU, Neuro Accute, and Rehab. After leaving the hospital, I still needed 24 hour care and my wonderful mom (a nurse) stepped up and took me to live with her for the next 14 months.   She helped me bathe, gave me my numerous medications, put up grab bars, and mothered her sick little girl.
I have many permanent effects from the stroke, though I have made significant progress. I still walk very slowly and shakily, still have very limited use of my hands, swallow with great difficulty, and look, as my son puts it, like Harvey 2 Face from Batman. I have had continuous therapy and around 17 surgeries (I lost count).  Even now I have very specific exercises I need to do daily.
I am home now with my 3 children and my unreal husband. They are what make me happy. My husband cooks, cleans, carries glass for me, and does so many other big and little things that I would need forever to name them all. Every day he puts his arms around me and tells me that he loves me. My kids open doors, hold my hand, and generally take care of me. But my favorite thing ever is when we all hang out and do absolutely nothing but laugh, and chat.
I owe everything to the Lord. I could have the best help, and work with all my might but if it wasn’t His will, I would never progress.  From the first day, and even before, the Lord has been with me.  So many miracles have happened in my life.   
I know that my prayers, even unspoken, are heard.   Heavenly Father knows us.  Not just kind of knows us but really knows us, takes care of us, and loves us with all his heart. He is always with us and times of trial are no exception.  Rather than feeling forgotten or alone, I have felt peace, love, and hope.
This blog is a journal kept by my family that records my struggle through the first bit after my stroke. To see how my life is today, visit Strokes For Dummies

May 9, 2010

Back Online

Got word that this blog had dissapeared and some people still want to read it for various reasons.  It's back up and running.

MB

August 5, 2009

We got back from our Sun Valley trip on the 29th.  Jodi was great!  We took her wheelchair instead of the walker because it is so much easier for her to get around that way and it did not exhaust her.  I guess the best thing that happened this year besides that she was able to interact with her family better, is that she could enjoy eating everything and I do mean everything!  She had such a good time and we all reminisced about how much she has gained since last year.  We are sure that by this time next year, she will be able to walk on her own.  She goes for more Botox tomorrow, but we think that the treatments are working.  Her in-laws go home for two weeks this weekend so she will be home and on her own with all three kids.  Of course her neighbors will be on alert and so will her family.  Pray that all goes well for her.  Aleq will be back in school so that will help too.  She was trying to walk all by herself the other day and she asked her husband to back off from her a little and give her less protection.  He did and she lost her balance and fell first on her knees but she slammed the side of her head on the cement driveway too.  Robert tried to grab her but missed and by the time he picked her up, he (not Jodi)was in tears.  I think it will be some time before he allows her that much autonomy again. Once more, I am sorry for taking so long to write, but there is less to report when I do not see her every day. Connie

July 20, 2009

July 14, 2009   Hi everyone, I am sorry that I have been lax in writing.  Not much has happened with Jodi since I last wrote, until today.  We headed to SLC for her to have her botox done on the left side of her mouth.  The botox will begin to paralyze that side of her mouth in about three days.  It will be such a pain at the beginning because she will experience the inability to talk and open her mouth to eat again.  Hopefully however, she will be forced to use dormant muscles on the right side of her mouth and that side will begin to get the exercise necessary so that her face will begin to function more appropriately, using muscles on both sides of her mouth and not just the left side.  This should improve not only her speech, but will decrease future dental problems.  As of now, due to the left side of her mouth over compensating for the right sides lack of cooperation, her front teeth have moved much too far to the left and she chews very little on the right side which causes TMJ and pain on the right side.  The Dr. decided to try to help her right forehead and brow as well. By depressing a muscle which made her brow on her left side come down too far.  Hopefully with botox, in time that muscle will begin to relax so that her brow on that side will be more normal.  I will try to keep you more informed now that this has taken place.  Her next visit to the DR. is in three weeks.  At that time, they will re-evaluate and decide if they need to do more.  The currant botox therapy should begin to wear off in about three months.


 

Jodi is out of insurance sponsored physical therapies at present and until we can appeal, she will be doing her own therapies.  Disappointing  but not expected.  Connie

July 15, 2009

Updates

July 14, 2009   Hi everyone, I am sorry that I have been lax in writing.  Not much has happened with Jodi since I last wrote, until today.  We headed to SLC for her to have her botox done on the left side of her mouth.  The botox will begin to paralyze that side of her mouth in about three days.  It will be such a pain at the beginning because she will experience the inability to talk and open her mouth to eat again.  Hopefully however, she will be forced to use dormant muscles on the right side of her mouth and that side will begin to get the exercise necessary so that her face will begin to function more appropriately, using muscles on both sides of her mouth and not just the left side.  This should improve not only her speech, but will decrease future dental problems.  As of now, due to the left side of her mouth over compensating for the right sides lack of cooperation, her front teeth have moved much too far to the left and she chews very little on the right side which causes TMJ and pain on the right side.  The Dr. decided to try to help her right forehead and brow as well. By depressing a muscle which made her brow on her left side come down too far.  Hopefully with botox, in time that muscle will begin to relax so that her brow on that side will be more normal.  I will try to keep you more informed now that this has taken place.  Her next visit to the DR. is in three weeks.  At that time, they will re-evaluate and decide if they need to do more.  The currant botox therapy should begin to wear off in about three months.

 
 

Jodi is out of insurance sponsored physical therapies at present and until we can appeal, she will be doing her own therapies.  Disappointing  but not unexpected.  Connie

June 22, 2009

June 22, 2009

I am so sorry, something was keeping my blogs from being posted.  I never did figure out what was the problem but it seems to be working again. 


 

Since I last blogged, a lot of changes have taken place.  First and foremost, Jodi has moved home!  What a wonderful big step for her.  We were able to set her up with an emergency necklace that she wears all the time.  If she has a fall or other problems, she just pushes the button on her necklace and she is able to talk to an emergency operator.  If she needs 911 called, they will do it and all the while stay on line with her until she receives their help.  If she just needs someone on a list which we gave them, they will call one of us and while they continue to talk to her, we can go to her home to help her.  She and her family are delighted!  They are together again.  Jodi loves being a full time mom and doing as much as she can on her own.  Of course, I keep Ana Jain most of the time and I go out a few days a week to help clean her home and do things that she still cannot do.  All of her family is pitching in as well.  They help with Ana Jain too and they are providing all the evening meals except for weekends.  Her Ward helps out with meals at that time.  She continues to feed the children their breakfast and lunch, give them their baths, do the wash each day and do some light cleaning.    It also helps that her in-laws are still coming up from St. George several days per week to help.

She is remarkable.  She continues to exercise each day, under the supervision of Robert. She continues to make miraculous progress when she stays healthy.  More to come, Connie

June 14, 2009

June 14, 2009

June 2nd, 2009                Wow! Jodi spent her first day at home alone with her two boys!  Quite an achievement for her and her family.  We kept phones close and I had Ana Jain.  Jodi reported that she loved it.  She was able to get her boys into the shower, get breakfast, lunch, do the dishes, do the full weekend worth of wash, clean the bathrooms.  She managed this while doing  her exercises and getting her own meds and making sure that she ate, got enough water to drink and rested off and on.  She was both excited with her progress and exhausted by the end of the day.  Jodi said that Aleq was so much help.  Getting things for her, carrying what she could not, and just general gofer stuff.  He said "Mom if we do good today, can we do this again? I love having just you with us at home,  like it used to be." Jodi looks forward to doing it again.  Possibly once every other week.  That is the week that her in-laws go home on Friday and I usually go out with Jodi to take care of the kids.  We will see. 


 

There is a young mother in our ward who is going through some things that are so similar to Jodi.  She did not have a stroke but they found a tumor at the base of her brain.  She had surgery about twenty days ago during which they were able to remove most of the tumor.  The tumor is a low grade tumor and also benign.  Her future looks promising but she is now experiencing many small setbacks.  Boy can we relate to that.  Her name is Jodi Brown.  She and Jodi Burton had worked together at the Shaken Baby foundation.  They were friends before our Jodi had her stroke.  Jodi Brown has been such a support to our Jodi during this past year and half.  As Jodi Brown continues to struggle with complications, we ask that when you pray for our Jodi that you will include Jodi Brown's name as well. Jodi is younger than our Jodi and has four children 10 yrs and younger.  Thanks so much!   That's it for this week.  Connie

May 21, 2009

2009                    Hooray! Jodi is finally over her pneumonia.  She is back to doing her therapies and all the activities that she is expected to do each week.  She spent the weekend with her family and she will be doing horses tomorrow.  She took Ana Jain to the Dr. for her well baby check-up.  Ana fell off of the couch and hit her eye brow last week.  She got three stitches which came out today at her appt.  Jodi had another chest x-ray to make sure that her lungs were good and all is fine.  More later.  Connie

May 8, 2009

May 7th

Jodi has once more contracted the flu.  She has been down for the count.  She has been sick since Monday but she began to eat a little yesterday.  She still looks awful and is too weak to do much more than sit up in a chair for a few hours.  She passed out two nights ago.(probably from low blood pressure when she got up). She has had to cancel all appointments but we are hopeful that she will be back to normal by this coming week.   She got the flu Saturday last, while she was at  home.  Her whole family came down with it.  I ended up spending Monday and Tuesday at her home taking care of both Jodi and her children while she was sick.  We are all glad that things are finally beginning to look up.  Connie

April 28, 2009

Update

Jodi went to therapy this week and came home exhausted.  Once again, she was made to walk what seemed like miles.  At first with two canes, then with crutches.  She was pushed to her limit on machines that exercised every possible muscle and then she walked some more with a brace that keeps her from falling yet allows her to walk on her own for the most part.  Needless to say, she slept well last night.  This Thursday, she will do her horseback riding which improves her equilibrium.  She was able to attend church with her family this week for the full three hour block.  Her first time since the stroke.  Up till then, she has only gone for one hour.  She keeps doing little "firsts". She has spent a lot more time in her own home where she is able to take on little bits of added responsibility for her kids and the house.  It is a quiet week this week other than these things.  She continues to do all kinds of exercises at home and has lots of "homework" from her therapists.   One disappointment, her eye doctor told her that she was not a candidate for eye surgery.  Her double vision is much improved with her new glasses but she still see peripheral double vision, which drives her nuts (much more nuts than she inherently is.) It looks like there is nothing more that can be done to correct the problem. The double vision contributes to her lack of balance and dizziness.  More later. Connie

April 13, 2009

April 13, 2009

Jodi and I laughed so hard when they had her run down the corridor at therapy today.  She claims that she never did have a lot of coordination but she says that her running is pathetic.  I had to agree.  She is a funny sight to behold as she comes down the hall towards everyone.  They all run for the sides for fear of being trampled.  Once she gets going, there is no way that she can stop quickly to prevent a collision.  In spite of the lack of coordination, she is really making head-way. The laughing is good for her and her sense of humor and ability to laugh at herself has attributed to her emotional stability.  She hopped like the Easter bunny, played basket ball, did her balancing exercises, jumped towards the ceiling, road a scooter, walked back and forth as fast as she could go. Of course, she did all of this with a lot of assistance and supervision.  She never uses her wheelchair except when in public places where she could be easily bumped.  Her facial muscles are getting stronger as well.  Today, we went to lunch and celebrated three months of being able to swallow.  She ordered eye glasses today as well.  They will help her double vision.  The doctor thinks glasses might do the trick instead of doing surgery.  Hope it helps her sight as well as her balance.

Jodi was able to give her speech concerning sexual abuse to the "law" folks at HAFB.  She got a lot of great feedback about what an amazing person she is.  She doesn't see that, but we have to agree.

Jodi and her family were able to join in the family annual Easter Egg Extravaganza and then have dinner with us.  Jodi ate like a horse.  She remembers only too well what it was like last year during the Easter family dinner when she could only watch everyone enjoy the food.

That's it for this week. Things continue to look up.

April 6, 2009

This  past week we spent every day at Jodi's home with her children.  She was not able to do all her exercises because some of the equipment had to be left at my house.  She did what she could but took advantage of doing such things as fixing breakfast and lunch for her children and small house hold chores.  It was great for her to be around her children both day and night.  I was mostly able to help out with the children and do some deep cleaning.  The week went quite well and she is looking forward to gradually moving back home. The more that she is able to accomplish, the closer that time gets. 

She walks a lot by going along walls and holding onto the table and other furniture as she goes.  She goes up and down stairs on her own and is able to do all her showering, hair care, etc, etc. without help.  She is getting pretty independent.  She will again begin riding therapy this coming Thursday. She looks forward to that. 

Lots of appointments for her this week.  She will give a speech at Hill Air Force Base on Tuesday about sexual abuse.  Her first speech since her stroke.  Her speech has improved so much but it may be difficult for some of the participants to understand a few of her words.  I will be there to help if that happens.  It is good for her to get back into normal life and do some of the things she used to do.  She however really misses singing.  Last week we were in the car and I was humming along with a song.  She said that that was one of the things she most missed, being able to hum along with music.  I project that she will be living at home by June and that she will be on her own hopefully by Christmas or soon after.  More later

March 23, 2009

2009                   Jodi did some interesting things at therapy this week.  They put a gait belt around her and while they hold onto it at  her back, she is able to run down a long hall with their support.  She was totally uncoordinated but at least she ran.  They told her to remember how hard it was for her.  In a month, they wanted her to reflect on her progress from this first time.  She walked a considerable distance and did a lot of standing in one spot while without help, she was able to bend over and lift a ball off of the floor.  These are things that she did not think she would ever do again.  Even though it requires a lot of concentration to do these things without falling, she is thrilled with her progress.  She is also seeing some real progress with her weight lifting exercises.  Jodi is able to get Ana Jain out of her crib while she is sitting in her wheel chair or sitting on the seat of her walker.  She can also get the children out of the tub while in her chair.  Little things that we all take for granted are such great big things to her.  She is especially loving being told that she needs to eat more.  She is so skinny and we do not want her to lose any weight.  Her eating gets better every day.  During the times that she spends in her own home, she cleans the kitchen, puts dishes in the dishwasher, does laundry  and other things that point to her being able to move back into her own home soon.  We will spend the full week of the 30th at Jodi's home while her in-laws return to their home in St George for Dr. appointments etc.  More later, Connie

March 11, 2009

     It has been a full year since Jodi came home from the hospital.  It seems like ages ago.  We were terrified to come home and face all possibilities on our own.  We will never forget the first two months.  Jodi slept in bed with me in case she choked and I would not know it.  I had her propped up in bed so that she could control her breathing and saliva.  Neither of us slept during that time.  Eventually we moved her to the recliner at night.  She slept with pillows all around her head and still she was precarious.  I am so glad that time is behind us!  We have had a tremendous support team of family, friends, neighbors, not to mention Doctors, nurses, and therapists.  We are so grateful for all of you who have helped get her to where she is now.  Every time that we get discouraged and think that she is not moving ahead, we look back over the past 16 months and cannot believe that  is she doing as well as she is. 

     Jodi  went to SLC this past week to see the facial muscle therapist.  She was thinking that she would discontinue going to her because we could not see much change.  The therapist brought out the pictures that she took at the beginning and compared them with what Jodi can do now.  WOW!!!!  What a big difference!  We were both so surprised to see what progress had been made.  Jodi also signed off with her Orthopedic surgeon this past week.  Her foot is doing so well.  She will have a minor surgery this Friday to replace her feeding tube and then she has three more surgeries down the road.  Two on her eye (one to take out the gold weight in her eyelid and one to correct her double vision) and one to transfer a nerve from one side of her face to the  other so that she can speak more clearly. 

     Jodi continues to work intensely at her therapies.  She will again be riding the horses to build her strength and help her balance.  That will happen at the end of March. Her attitude is always up-beat and she is determined to get home with her family ASAP.  Robert is  good with her and gives her many challenging exercises to do when she goes home for the weekends.  He wants her home too.  He has been remarkable through all of this.  We could never have found another man who would be so loving and caring  as well as being such a remarkable father.  

     Jodi  is getting more independent every day.  She uses the walker most of the time without any one to assist her.  At therapy, she is walking with her "ski poles" and showing marked progress.  She also walks (very shakily) all by herself with the therapist at her side to spot her.  She only takes a few steps but it is progressive.   She eats up a storm each day.  It takes her quite a while but she does not seem to care.  We are all so grateful for this special blessing.  More later, Connie

February 24, 2009

Jodi has pneumonia and was scheduled to go to her Dr. this AM when she had what appeared to be another seizure. The paramedics were called and after they were able to stabilize her, I took her to her Dr. After tests, x-rays, it was determined that she was dehydrated due to her high temperatures with the pneumonia. That is probably why she passed out. Her heart rate was so high and her respirations as well. She was cold and clammy and it was difficult to get a blood pressure. When they finally got it, it was 50/80 and then slowly went up to 80/40. She keeps doing things that make me realize just how fragile she is. I told her that from now on, I was going to give her so much water via her feeding tube that she would be floating. The good news is that last week during therapy, she walked with "ski poles" about 400 feet. She walked about 6 feet without any help. Great! Huh? That's it for today. Connie

February 4, 2009

Jodi had a great physical therapy session on Monday. She walked with something like ski poles. She was able to walk about 190 feet with them. She also took 6 steps without any support or help of any kind. I think that it was a real eye opener for her. Up to now, she was thinking that she may never walk on her own again. When she took those steps she was thrilled with herself. She had two hours of non-stop therapy and although she was exhausted after, she felt so good about herself. Yesterday and today, she has walked without her walker everywhere in the home that she needs to go. I put the gait belt on her and hold onto her from behind so that she will not fall. Every time that she does this, she makes progress. She is doing exercises on the New Step machine as we speak. We are going to Macy's today to use a gift certificate that she was given. She will use her walker while she shops. Things are moving ahead! She will see the therapist who works with her facial muscles tomorrow in SLC. Connie

February 1, 2009

Jodi is out of the hospital. She is a little weak but is looking forward to going back to therapy on Monday. She has therapy three times this week with one of them in SLC. A busy week but should be a good one.

Connie

January 27, 2009

January 26, 2009 Jodi was admitted to the hospital today. Not to worry though. The antibiotic she was on for her pneumonia did not do the job so she is receiving IV antibiotics. She should be home in about two days. The only thing that is discouraging is that just when she seems to be making progress in therapy, she has a setback. This will be a short one we hope. Thanks again for all your prayers they make such a difference. Connie

January 23, 2009

Just a quick update: Jodi has been under the weather this whole week. After a night of temperatures of 103-104.6, I took her to the Dr. and she had pneumonia. It all began with a cold that she contracted from her children. As a result, there has been nothing to report as far as progress or therapy. She is on a good antibiotic and hopefully within a few days, she will return to good health. Heidi, Jodi said to wish you a belated happy birthday. Connie

January 14, 2009

  Jodi walked with the four wheel walker 500 ft.  today.  She did it without a gait belt or anyone holding on to her for fall risk.  I however followed one step behind her with my arms ready to catch her.  We are trying to train her mind to think that she can walk without any assistance.  She continues to eat most of her calories instead of receiving them via feeding tube.  Things keep improving for her.  Connie

January 8, 2009

January 8, 2

Jodi and I went to I Hop yesterday after her therapy. It took her about 45 minutes or more but she ate one pancake, one sausage link and a cup of hot chocolate. Hoorah!!!! She apologized for taking so long. I could have waited hours for her. It was so fun to see her enjoy so much of the foods that she likes. She worked hard at therapy and was exhausted but happy. Robert brought her kids to see her last night and little Ana Jain wants Jodi and Robert to hold her more that she wants Wendy or grandma. Things are moving in the right direction. Connie

January 7, 2009

January 5th, 2009

January 5th 2009.  Can you believe that we have been doing this with Jodi for so long?  She so enjoyed the holiday's with her family.  Little Ana Jain is faring well.  Tommy, Jodi's three year old is a little jealous of her.  He says "I like to hear her cry, It makes me feel happy" and then he pushes her or takes a toy from her.  Some things never change.  Jodi went to Stewart Rehab for the first time today and they were so positive.  They were amazed that she was swallowing after so long.  They said that that just never happens after a year.  What a miracle!  They were impressed with how well she was doing in every area and with her attitude.  They want to get her walking on her own asap.  She is excited to get started and I am happy about not driving to good old SLC.  It snowed like crazy today and I know I could not have made it to the U of U. Connie

December 22, 2008

December 22, 2008

Almost Christmas and Jodi and Robert are looking to take little Ana Jain home for good.  Everyone is a little leery about it but it has to happen sometime.  Robert is going to be off work for the next two weeks beginning this weekend.  It is a perfect time to take her home and get her used to being with him and Jodi as well as spending a little time with Roberts's parents.  We are all praying that the transition will not be difficult for her.  If she shows signs of separation anxiety, she can always go back to Jodi's sister Wendy's home for a few days here and there until she transitions a little better.  She already has a good relationship with Robert and Jodi and her brothers but she does not know Roberts parents very well and they will be tending her after Robert goes back to work.  Please pray for her during this critical time. 


 

Jodi will be going home during the next two weeks as well.  I will continue to take her to her therapies because it will be impossible for Robert to take her with all the kids.  She is very much looking forward to going home but a little nervous as well as this is the first time that the whole family will be reunited for any length of time.  Roberts's parents will be in Provo for most of the two weeks, leaving Robert totally in charge of his little family.  Quite an undertaking but we are here to help if he calls for us. He is determined to try it alone and wants to experiment with their lives being back to a little bit of normal even if it is for only a couple of weeks.


 

Jodi continues to be involved with therapy and she is making good progress.  She is only scheduled for two more appointments at the U of U and she is not looking forward to changing therapists.  She is so attached to the ones that work with her.  She will be going to the Stewart Rehab in Ogden beginning in January.  As far as not having to travel so far, that will be great.  We are hoping that she can continue to get the same type and degree of therapy when she makes the move.  Her swallow continues to improve every week.  She works at it each day all day long.  Her emotional outlook continues to be so good and optimistic that she wows all those who work with her.  She is a great inspiration to so many.  Connie


 

December 10, 2008

December 10, 2008

Today was a good day in rehab.  Jodi was able to walk for the first time in going on four months.  She used her walker and her walk was very impressive.  She still has balance issues but she has not lost any of what she had gained before her foot surgery.  Her foot was too sore to use a whole lot because of stiffness so she only walked short distances.  She is doing so well with her swallow that we are going to try taking her off of more of her tube feeds.  Hopefully she can work (and it is very hard work) at eating enough to replace the # of calories that she will need to replace the eliminated nutrition.  Her swallow literally gets stronger everyday!   She continues to amaze her therapists with her desire to work through pain and tough times.   

More later, Connie

December 9, 2008

December 9, 2008


 

Jodi got her cast off and is sporting an ugly boot but she is happy.  Each new device gives her a little more mobility.  She is still unable to walk or try to walk because she needs range of motion therapy (the foot is extremely stiff) and as usual, the insurance is taking it's time deciding what therapist they will cover. 

Jodi's swallowing continues to get better.  She manages to swallow a cracker, a six oz. pudding, and a four oz. thickened drink each day.  It is a struggle at times but if she keeps it up, it won't be long until she can give up one can of her tube feedings. Her goal of course is to give up all four cans and be on a general diet.

She continues to go to therapy twice a week which gives her something to work towards every couple of days and keeps her going.  She is making slow but continued progress.  Connie

December 1, 2008

December 1, 2008

We have passed the one year mark since Jodi's stroke.  We had a family party to celebrate her life and progress.  It was so good for her to see the photos that we had taken of her during the year.  She could see how far she had come.  We went looking for Christmas decorations for her tree today. Somehow they got lost in the shuffle of everything last year.  I am sure that she will find them in time for next year but it is fun to shop for new ones this year.  She and her family will spend family night decorating her home and tree.  She directs from her wheelchair and Robert obeys.

She spent most of the thanksgiving holidays with her family in her own home.  Her family joined ours for Thanksgiving dinner and she was able to eat a very small amount of a roll and some turkey.  She takes what she can get at this point and continues to work hard to regain all of her swallow.  There will be many changes in the new year as Robert's company is changing to a new insurance plan.  That is good in some ways but it also means that she can no longer go to many of the Dr's that she has been seeing.  She will also begin her physical therapy and speech therapy here at the Stewart Rehab at the McKay-Dee hospital.  She is a little nervous about it but we are assured that they are very good. Jodi hopefully gets her cast off  this coming Friday.  It will be replaced with a plastic brace.  She will wear it for many months as she re-learns to walk.  She tells me to express thanks again for all of your prayers and messages.  She loves to read them and she is constantly overwhelmed with gratitude for all the prayers going on in her behalf. She knows that it is your faith coupled with hers that make the miracles happen.  Connie

November 20, 2008

Jodi had the halo removed from her foot today. They placed a cast on her foot/leg for the next two weeks and then she will graduate to a walking-boot. Everything went well and she can soon start to see what balance she has and begin walking. She is feeling well.

MB

November 16, 2008

November 16, 2008

Jodi is progressing well; and will be getting the halo off of her leg this next week. After that she will be able to begin aggressive therapy again and start to build the muscles back that she will need to use to learn to walk. She is excited to have the halo off and start to progress.

Coming up on the one year mark - November 29th. In many ways she has surpassed anything anybody thought possible. In others, she had hoped to be much further along. Everyone around her is just so happy is she is with us. We love her so much.

Keep fighting J, we're all with you.

Matt

November 6, 2008

November 5, 2008

Jodi had her first good day today.  She only had one short stint of nausea and was quite cheerful.  She still slept a lot because she remains pretty weak.  It has been a full month since she got so ill.  She will have therapy at the U of U tomorrow but I will ask them to go easy with her.  It is so important that she get back into the routine and begin to use the extra therapies that her insurance has allotted.  Her speech therapist told us that she may have to start at square one with developing her swallow.  Every day that she goes without doing her swallow exercises (including actually swallowing) she loses 20 percent of what she has gained.  If that is indeed so, than she will have her work cut out for her to get back to where she was before she got sick.  Please continue to pray for her, We depend on all your prayers.  They truly make such a difference.  Connie


 

November 4, 2008

October 30

Things are slightly better with Jodi. Although she continues to be nauseated most of the time, She is able to retain the food going into the feeding tube. She stays hydrated as well during the day. Those are two very positive things. She remains low on energy and sleeps a lot. She saw the eye DR. yesterday and he was pleased at how good the right eye is looking. The nausea thing is a mystery to say the least and very discouraging to both of us. I suspect that it has to do with the tube feedings that she gets at night but as long as she is not throwing up, we feel that she needs to continue getting the feedings. She is far from being back to the level that she was before she got so sick but we are hopeful that she will be fully back to normal soon. When she gets sick, it takes forever for her to regain her strength. We are planning on her being able to go home this weekend and be with her kids for Halloween. Robert is pretty sick with a miserable cold and we don’t want to expose Jodi so we will see how it goes today. If he is doing better tomorrow, then she can go home. Connie

October 21, 2008

October 21, 2008

We spent all day Sunday at the Ogden Regional ER.  Jodi's  feeding tube became blocked when we tried to give her Potassium , which she had become low on.  During her stay there, they again gave her IV antibiotics and morphine for some pain which helped with her nausea for a while as well.  She slept all night for the first time in weeks.  On Monday I gave her oral Augmenten and Flagel which once more brought on so much nausea that I am sure that is why she is so sick at the present time.  I discontinued those meds today as she had been on them for the full 10 days.

 
 

She is doing sooooooo much better today, although she is pretty weak.  I should be able to start her back on liquid food in a day or so and then hopefully she will regain her strength.  We ventured to SLC yesterday to see the Orthopedic Dr.  She was told that the leg looks fine but that he might ask her to keep the brace on for 6-7 more weeks and after that she will be put into a walking cast until a brace can be made for her. 


 

The good news is that her insurance has OK'd 30 more days of therapy for her so as soon as she is ready, she will be going at least 3 days /week.  I hope that she can get all those therapies in before the new year when her co-pay kicks in again.  It will be hard to do all of them during the holidays but we will do our best.  It is coming on to one year since the stroke and she is a little emotionally down what with all the setbacks.  She was hoping to be in her own home by now.  We just keep going and relying on what has been promised to her in her blessings.

October 17, 2008

October 17, 2008

October 16, 2008  Jodi is doing slightly better.  Her lungs sound awful in the AM but by noon they clear up.  She is still fighting pneumonia but other stomach problems seem to be slowing down.  She continues to fight with constant nausea as well.  We took a trip up to Ogden Regional to get blood drawn to try to determine if her electrolytes are stable and if her white count is coming down.  She sleeps most of the time because the only thing that she can have(that makes any difference) for the nausea and achiness is oxycodone which I give sparingly.  It makes her sleep.  That's it for now, it has been 8 days with slow improvement.  Hopefully she will turn a corner soon.   Connie

October 13, 2008

October 13, 2008


 

Oct 13, 2008,  I am sorry that I kept all of you in the dark for the past few days but it has been hectic to say the least.  Jodi awakened Thursday AM and complained of stomach cramps.  She began to vomit which led to aspiration into her lungs and pneumonia.  She also had severe weakness.  I took her to the ER at Ogden Regional where they admitted her for tests.  The Dr. that did the admitting was great and right on top of things.  Jodi was given antibiotics for the pneumonia and other problems. X-rays showed that the tube that had been placed into her small intestine had dislodged and was sitting in the stomach.  Her white count was 41,000 (extremely high and indicative of infection. A normal wbc is between 5,000-10,000. It was decided that the vomiting had dislodged the feeding tube.  Jodi was to see the in house DR. the next AM and have the tube replaced that AM also.  By 4:00 pm Jodi still had not seen the Dr.  I had asked several times when she would see him.  I finally had a little fit and the Dr. showed up but by then, I had talked to Dr. Edgely at the U of U and he said for us to have her transferred down there.  She spent the weekend there where they reinserted the "J tube" and then sent her home.  Unfortunately, Dr. Edgely was going out of town and had Jodi seen by another Dr. who did not know her history very well.  I think that she was sent home prematurely and it looks as if she may be returning before the day is out.  She is still vomiting and continues to have diarrhea.  Her lungs are full of junk and she struggles to breath.  I have been giving her Pedialite in the "J tube" continuously since last night and giving her antibiotics.  I also called her primary physician and got an RX for Zofran for the nausea, which has helped but she is still so weak.  The U of U Dr is treating her for something called c-diff which if she has it, she probably got it because for 10 days prior to all of this, she was taking Keflex for an infection on her leg with the "Halo".  Keflex can cause c-diff. I think that the Drs assume that is why she has been vomiting and has diarrhea.  They ran tests for c-diff but I did not find out what the tests showed.  I will try to be timelier with updates.   Connie


 

October 8, 2008

October 8, 2008


 


 

Oct. 8, 2008  Jodi saw a therapist for facial rehab yesterday.  She was quite encouraging.  She told Jodi that after the stroke her left facial muscles had to compensate for the loss of her right face.  Even though the muscles and nerves are coming alive on the right of her face, her left muscles continue to over-compensate and do not give the brain the chance to recognize that the right muscles are ready to work again.  As a result, Jodi has so many more facial exercises to do each day that will help reconnect the brain to the right side of her face.  Should take around 6 months but there is reason to believe that Jodi can recover up to 60% of her natural face if she works hard.  She is very encouraged.  If she is able to regain those muscles, it will help her speech a great deal as well.  The pain in her left foot is lessening now that we are through adjusting the struts and forcing her foot to move into the upward position.  She sees the orthopedic surgeon on Friday and hopefully she will be on her way to the last half of her time with the "halo" on her foot; about 5-6 more weeks to go.  We are bringing her off of the pain meds and she is doing well.  Her emotions are sort of up and down while she is in this limbo.  She hates being so immobile and not being able to keep the progress with her walking therapy.   She wants to take this chance to tell everyone thanks for their continued support through this blog, through prayers, visits, food, etc. to her, her mom, and her family; especially Matt – without him, she would have no purpose. Connie

September 23, 2008

September 23, 2008

Sept. 22, 2008         Jodi and I were disappointed to learn that she will need to keep turning and tightening the struts on her leg halo for another 10 days.  The Dr. did discover what may be causing much of her pain however.  It seems that the ankle bone is protruding too far back and causing her toes to curl under with too much stretch to that area.  As a result, the Dr. with the help of the computer was able to calculate the needed changes and we now need to follow a new print out as we tighten the struts.  We sure are hoping that all of this will be worth it.  She goes for another x-ray tomorrow to see if the foot is doing what it is supposed to do under the changes made.  She has another week of Dr. appointments so it continues to be very busy.  Many more trips to good old SLC.

September 19, 2008

September 19, 2008

Jodi has had a couple of weeks of a lot of pain.  Much more than we had expected to have with this foot thing.  As a result, we have had to cancel her therapies and she does a lot of sleeping while she is on pain meds.  Our concern of course is that she will have difficulty coming off of the pain meds at a future date but at this point we have no choice but to help her get past this hard time.  On a pain scale of 0-10, she lingers somewhere between 5-9 all the time.  We cannot seem to get it below a 5 for any length of time.  We are almost relieved that the pain meds help her sleep a lot. Otherwise, she would not be able to get through this time.  We go to the Dr. tomorrow and we are hoping that he will say that it is time to stop stretching the back of the calve and the foot (something that I do each day when I twist the struts tighter on the halo around her leg), and start the six weeks of just keeping the foot in a place where it will not re-contract after the halo is removed.  During those six weeks, we are hoping that the pain will gradually subside and we can gradually take the pain meds down as well. 


 

We are missing a lot of special things during this stressful time such as relatives weddings, My brothers awards ceremony at WSU etc. but we have no choice.  It seems that life is passing us by but in reality, we are working through many aspects of real life every day.  We feel bad about missing special things but we make it to the most important which includes Aleq's  parent teacher conference, Ana Jain's Dr. appointment and the few things Jodi can participate in to be a mother.  Life goes on for us albeit slowly and sometimes tediously but we continue to be very hopeful and grateful to all of the support we receive from so many of you.  Connie

September 8, 2008

September 8, 2008

Sunday, Sept. 7, 2008 Jodi continues to do well. Her foot is ghastly looking but she is bearing it well. Her pain is controlled with narcotics (to which she is hoping not to become addicted.) In two more weeks, she will have had the brace on for half the time. We are counting the days. When she hits the half way mark, the foot should be where the Dr. wants it to be and we can quit the daily painful adjustments to the brace. She then keeps the brace on for another six weeks so that her foot will not go back to the way it was. More than anything, we are looking forward to being half way there in a couple of weeks. She has a pretty busy schedule this week. We will be going to therapy on Monday and Thursday, to Doctors on Tuesday, Wednesday and Thursday. All of course in SLC. We are getting well acquainted with books on tape. We just finished the “Twilight” series as well as “The Host”. Not much else to report. I will keep you informed.

August 29, 2008

August 29, 2008

Jodi is doing pretty well.  She is getting infections in her foot but with the help of antibiotics, we are keeping the bugs at bay.  She is attending therapy only once a week but we are filling in as best we can with exercises at home.  Her mood is good for the most part.  She continues to love your messages.  Her swallow continues to progress but with such slowness that at times it is discouraging to her.  It looks as if a lot of the tube feeds that she gets are causing to reflux and cough a lot.  The sooner that we can get her off of those, the better.  I don't expect that to happen any time soon.  More later.

August 20, 2008

August 19, 2008

Jodi has had a rough two days of pain in her leg and foot.  Each day as I adjust the brace, it causes her considerably more pain.  The Dr. assures us that this pain will eventually go away.  The pain has added to a little depression and she has been teary and somber.  She also has wanted to sleep a lot which is normal with pain.  As you all know, pain can be such a drain on energy.  She awakened this morning and after getting her morning meds including the pain meds, she decided to get out of bed and try to do some errands with me.  It is extremely difficult for her to transfer from her chair to the car but she is willing to do it instead of lying in bed or watching TV all day.  She sees the eye surgeon tomorrow to get her dressing taken off.  We are anxious to see how it looks and if she can see any better after a few days of being covered.  She will be going to therapy on Thursday so I will let you know how that went.  connie

August 18, 2008

August 18, 2008

It was a crazy and tiring day yesterday, august 16, 2008.   Jodi awakened early in the AM with a fever.  By 8:AM it was 101.9 degrees and her right eye was mottled, swollen, red, and  gunky.  I called the eye center to cancel and they said that they wanted to see the eye and for her to come down anyway.  I took her to the leg Dr. first so that they could rule out infection in the leg.  All was ok there but they spent some time with me showing me how to adjust the leg contraption each day.  By the time that we got to the eye center, her eye had cleared and her fever was down to normal.  After checking the eye, and not finding any evidence of infection, ( It was no longer inflamed or swollen and barely red)  they performed the surgery under local instead of general anesthesia due to worry about the reason for the fever.  They also lifted her right cheek a small amount so that it would help her talk.  She is now home with both her leg and eye bandaged.  Her leg looks nasty to say the least but she will get used to it.  By the way, when she had her temp I also called her brother and his neighbor to give Jodi a blessing.  It is no wonder that all was well with her by the time we reached SLC.   We take a lot for granted! Connie

August 14, 2008

August 14, 2008

Jodi's surgery went without incident.  She is recovering well with her foot in the air.  Her foot is a site to see.  It is about 10 inches in diameter and wrapped in elastic bandages.  In spite of the bandages, you can look inside and around her toes to see wires about the size of a coat hanger coming out of her foot and joining the frame around the foot.  Makes everyone gag.  She gets the bandages off on Friday after she has her eye surgery.  At that time, the Dr. will show me how to use the frame to adjust her foot a little each day until it is in the position that the Dr. wants.  That should take about six weeks and then she has to keep her foot in the frame for another six weeks so that it will not go back to it's original position.  She is pretty dependant on me again as she cannot put one bit of weight on that foot for the full three months.  It is fun to get her in and out of bed and especially in and out of the car with that huge thing on the end of her leg. We both got laughing yesterday while I was trying to help her get into bed and we did it wrong.  I was pushing her and she was laughing too hard to do anything.  I nearly dropped her.   I am not sure that we will ever get used to it.  Her spirits are good and she has been resting a lot today as expected.  Her pain is being controlled so all is well.  Thanks again for your prayers.  Connie

August 11, 2008

August 11, 2008


 


 

Jodi is looking towards an exceptional week with her two surgeries.  We could once more use your prayers in her behalf.  She has the foot surgery tomorrow AM and then the eye surgery on Friday AM.  We will keep you informed.  She just got word from her sister Wendy that the Dr. is concerned that Ana Jain is not gaining weight.  She is still only 14.5 lbs and she is nine months old.  She is crawling now which will cause her to lose a little weight as well.  On top of everything that Jodi has to worry about at this time, she is also worried about Ana Jain.

August 7, 2008

August 7, 2008

Jodi saw the eye Dr. in SLC today.  He is going to do surgery on her eye lid to make it permanently and partially closed for a while, at least until the eye nerves that were affected by the stroke heal.  No one knows how long that will take.  He will put a weight in her lid and bring the outer corner  together.  The surgery is taking place next Friday and it will help her so that she does not have so many eye infections.  She has one right now.  She is having two surgeries next week.  One on Tuesday and one on Friday.  Wow!  The good news is that the Dr. is noted for being the best in the United States and he is going to follow her facial healing as well.  After a year if her facial droop is not healed,  he will be doing the nerve transplant to help her regain her normal look.  It will not be 100% but it will help her facial droop much less noticeable.  


 


 


 

August 5, 2008

August 5, 2008

We had great news today from the Dr. who is doing Jodi's surgery on her foot.  Due to the fact that during the past four months, Jodi has been working so hard doing her therapies and her foot is so much stronger, they have decided to do a much less invasive surgery.  It will be one where they insert screws into the bones of her calve and ankle which will be attached to a brace around the outside of her foot and leg.  Every day, I will adjust the screws a little tighter so that her foot will be forced into a flex position with her toes brought up towards her leg.  She will be in the brace for about three months.  During that time, she will be non weight baring except for transfers from her wheelchair.  Hopefully, physical therapy will be able to work with her other leg and upper body during that time so that she will be strong and need very little to prepare her to walk naturally when the brace is removed.  This will mean that she will be walking normally without the aid of the added brace that would be life-time for her.  The DR. assures us that this less invasive surgery has been very successful and should do the trick.  We are hopeful!  Connie

July 29, 2008

July 28, 2008


 

Jodi and family had a pretty good time in Sun valley.  It was hard in some ways due to all the stairs but it only means that she had to exercise a little more.  We all look forward to next year when she should be able to walk and eat everything that she wants.  Her eating is just in the beginning stages so even though she can sit with us during meals, she still can only take a few tiny bites.  Just enough to wet her appetite. Jodi celebrated her birthday in Sun Valley with all of us present. Her children did not want to come home so I guess the vacation was a success.  All the family pitched in to help Robert and Jodi so that it would not be too hard for them and so that they could enjoy themselves as well.


 

Jodi is not involved with therapy at the U of U at this point as she is saving her therapy days for after her foot surgery.  The surgery is scheduled for 8/11.  She is doing a lot of her exercises with me on a mat and she is riding an exercycle every day.  Her swallowing is slow to improve but at least it is improving.  Patience is such a hard thing to learn. 


 

Ana Jain is getting so attached to Wendy and Kevin's family that it continues to be a source of worry for us but we are hopeful that as Jodi gradually moves back to her own environment that we will be having Ana Jain with us daily as well and things will get better in that regard.  We love and appreciate your continued prayers.

July 15, 2008

July 14, 2008

Hooray, Jodi has been cleared to eat most everything that she wants. We have to thicken some things and she still cannot eat milk based foods. She will have to begin slowly so that her stomach can adjust to food but we are soooooo excited!. We go to Sun Valley this next week and she is happy that she can go out to eat with us. This is such a great milestone for her. We are convinced that it is because of the thousands of prayers in her behalf. Thanks to all of you for praying and continuing to pray for her. We love you. We will not be messaging you for a couple of weeks while we are gone. Please remember to pray for her when she has her foot surgery. It is scheduled on August 11th. Once again, Thank you so much!!!!

Connie

July 9, 2008

July 9, 2008

It has surely been busy getting back into the groove with Jodi since getting home from my trip across the USA from Virginia. She did quite well with staying at her own home. I am grateful for all of the help from her in-laws and her wonderful husband. While I was gone, Jodi continued with therapy at the U of U and I was surprised to see how much she had improved since I left. She has a little more balance as she walks. She has been using a quad cane (has four little feet on the bottom for extra help with balance) along with one-sperson assist. She was able to hold on to Ana Jain today while she leaned down from the wheel chair and picked up something that Ana Jain had dropped. That is a real improvement! She ate a cracker last time that she had speech therapy. We were all excited about that!

I am sorry that I have not been too diligent with this blog since we got home, It seems that our lives are so much more hectic since my son and his family of nine have come here. They and we will be happy when they finally are in their own home but at this point they are just looking. In the mean time, we are sharing the responsibility of helping his children feel busy and happy. They are staying in Hill Air Force base housing and it is boring for them so they spend a lot of their time with Jodi and me which means of course that our lives are far from boring. Jodi has enjoyed them and her spirits seem good since my return.

Connie

June 26, 2008

June 23rd, 2008

Aother hard day of therapy but we feel that it is paying off. Her swallow is getting better by the day. It will be some months before she will be safe enough to do much more than swallow small sips of water but it is coming. We are grateful for all your continuous prayers in her behalf concerning her swallow. We are so hopeful that all will be restored. She was shown the safest way to pick up things off the floor during PT and she was allowed to practice it a lot. She still needs a lot of help with it but as her legs get stronger, she will be able to do it with better ease. Oh, by the way, Jodi reminded me that Picabo Streets name is not spelled Peek-a-boo. Sorry, Picabo! Also, for those who do not know, the wing at the U of U that was named after Picabo is Peek-a-boo, I C U. Funny huh? That’s it for now. Connie

June 19, 2008

June 18, 2008

Jodi has not been able to do the horses because the Dr. said that her eye infection is most likely because of the dust from the horses. She will not be participating with the horses until next week and then we will have to tape her eye shut. They had to stitch her right eye closed to avoid further irritation to her cornea and the possibility of losing more sight. She had the opportunity to have Peek-a-Boo Street come see her at our home. A mutual friend brought her to see Jodi. She and Jodi both spoke at a fundraiser a couple of years ago in Park City for the Juvenile justice centers of Utah. They wanted to meet each other at that time but did not get the chance. It was nice of Peek A Boo to stop by to say hello and spend a little time with Jodi.

CB

P.S. - Did you all know there is a special wing of the U of U named after Peek A Boo?

June 15, 2008

June 11, 2008

we took a test ride on Front Runner today to see how long it will take us to go to Jodi’s therapy on it instead of driving each time. I figure that it costs me about $17.00 round trip to the U of U. It takes about a half hour more but it only costs eight dollars for both of us to go that way and it drops us off right in front of the hospital. It was kind of fun and We are thinking that it will be worth it. At present, we are going down to SLC about four times per week. That does not count the wear and tear on the car and my nerves while driving in the rush hour traffic. I think that Jodi had fun doing the test drive and we took her sister Wendy and her family along with Ana Jain with us. She is the sweetest baby in the world.

Jodi is really working hard with her therapy. She has developed an infection in her right eye that we are having trouble getting rid of. Jodi still tires easily but she is starting to get a little more stamina. Wendy will take her to therapy tomorrow and then I will take her down on Friday to the eye specialist. More later.

Connie

June 9, 2008

June 6th 2008

Jodi went to therapy at the U of U Thursday and had a good hard workout. It was good for her to get back into the grind. They were impressed with her progress. She also went that evening to the horses. It made for a long day but it is good to help her increase her stamina. Speech therapy is trying to refer her to a specialist to see what would be the best course to take to get her to swallow again. She will spend the weekend with her family at her own home. She always looks forward to the time with her family in her own space.

Connie

June 2, 2008

June 2nd

there was some misunderstanding and Jodi will not be starting with her therapy until this coming Thursday. She is looking forward to it. It is a go on the balance clinic. She should start going to it sometime this month. Hopefully it will help with her dizziness etc. Jodi went to see her doctors in SLC last week and all is fine. She had an EEG (electroencephalograph) which measures brain waves. It was given to make sure that everything is alright. We expect it to be fine. Jodi is having little Ana Jain over more often and she is growing quite fond of her. Ana Jain continues to be more attached to Jodi’s sister Wendy but that is to be expected at this point. She is beginning to be quite comfortable with Jodi but it is going to take time for her to bond to her in a mother daughter way. One of the tragedies of this stroke. More to come.

May 28, 2008

May 27th

Jodi stayed overnight with Robert and the kids for the first time in her own home since the stroke. It was a great experience even though she was sad when she came back to my house. More than anything, she wants to be at home being a mother to her children and a wife to Robert. She very seriously mourns her normal life with her family. She will go to Aleq’s graduation party for pre-school tomorrow and she is looking forward to that. She, Robert and the kids went to Heber with his family for memorial day. Jodi is gearing up to start her therapy again this next week. She and I continue to do exercises every day. I love her sense of humor. She keeps me laughing as she makes fun of the way that I do the exercises with her. More later

Connie

May 27, 2008

May 23rd 2008

Not much happening with Jodi for now. She went to her horseback riding therapy on Thursday. Even though Jodi is through with Rehab Without Walls, Her therapist has offered to have her come and do the therapy pro bono, just because she loves Jodi. We very much appreciate her. We have made many new and dear friends through this experience and Cindy is one of them. It is a hard workout for Jodi. Jodi says “anyone who says that riding a horse is not working out is nuts”. Today, she was lucky enough to work on my exercise machine (which helps her brain to re-establish the walking pattern) then go on errands with me where she was made to walk all over the stores with her walker. She was exhausted at the end of the day. Tomorrow, she will go to the movies with our family. We have tickets to see Indiana Jones. We plan on going to the cemetery tomorrow as well. It is always too crowded on Memorial day and we have plans to be in Park City that day. Actually, she will not be going with us to Park City. She is planning to stay with her family at her own home from Sunday night to Monday evening. This will be the first time that she will spend the night all alone with her family and then be entirely alone with her family on Memorial day. It should be nice for all of them. Her physician lives directly behind her if she runs into trouble but I do not anticipate any. Little Ana Jain continues to grow closer to Jodi and we are grateful for that.

May 18, 2008

May 16th

We went to the eye Doctor and Jodi had her swallow test. Her eyes are improving daily and they hope that by the time a year is up since the stroke, that she will not need any follow up surgery to help her right eye lid blink. They are sending her to a vestibular and balance clinic if her insurance will opt for it. They also talked about the drooping and lack of control on the right side of her face. They mentioned that she can have a surgery after a year in which they can take a nerve from the left side of the face and transplant it to the right side. That should improve the situation considerably. It should help her speak more clearly as well. The swallow test was not as positive. It seems that the food goes down the right way but one of the lower muscles does not move up to open the sphincter that allows the food to empty into her stomach. There is some question as to if that will ever happen. There is a surgery that can be performed on that muscle that will allow the food to go down but the problem with that is that if the food can go down, it can also come up easily. She would probably have a lot of reflux for the rest of her live. We will talk to her GP and perhaps see a specialist to get more information on the procedure before she ever has it. In the meantime, she continues with her muscle exercises to see if per chance that muscle will begin to cooperate. She was discouraged about the conclusion but she is still optimistic over all. Her foot surgery will not take place until early august. She is on her last day with Rehab without Walls and will start out-patient therapy at the UofU in two weeks. In the meantime, she will have to contend with me every day as her therapist. I will keep her doing her exercises so that she does not lose anything. She is planning on going to her brother and sister in laws home for Sunday Dinner. She was able to go see a great comedian on Tuesday evening with her siblings and last Saturday she took her boys to the zoo with her sister, her kids, and myself. She is able to get out and do more now that the weather is getting better. More later.

Connie

May 12, 2008

Note from Jodi

I took my boys to the zoo on Saturday along with everyone else in Utah. We had a great time! They were thrilled with the snakes and the white alligator. Tommy was so good and we painted their faces like animals.

I am doing well but still need help . They say my face may never come back but there is always surgery.

Mother's Day

I am sorry that I have not written for a while. My brother passed away and I got caught up with everything that concerned that sad experience. Jodi has only two more days with “Rehab Without Walls”. Next week we will begin going to SLC for her therapy. She has appointments this week with the eye doctor to see what they can do to help her eye recover. She will also go in for an EEG. A brain wave test that will be able to help them further understand what more that can be done for her and what parts of the brain are still affected. Mothers day was good for her and she seems to have stopped bleeding enough from the angio site that she will resume her physical therapy tomorrow. They are going to have a little farewell party for her when she has her last therapy day with RHWW. We are looking forward with anticipation to therapy in SLC. We will see how that goes. More later.

May 2, 2008

May 2nd

Jodi continues to slightly bleed from her angio site (will she ever get better?) so is still taking it a little easier than usual. She is having Physical therapy right now but she is doing only upper body strength exercises. That is ok because she is doing better every day with what little walking that she is allowed to do. She went shopping at Cosco yesterday and did fine pushing the cart. She does tire easily so she will need to increase her stamina when she can go full force again. We hate these little delays. We are still waiting to hear about her swallow test. I have a call into the Dr. about that but have not heard back. Little Ana Jain is six month old today and Jodi is getting quite bonded to her. Ana is still bonded more to Jodi’s sister Wendy but she is showing signs of bonding with Jodi. Jodi’s whole family will be staying overnight with us as Robert is painting their basement and doesn’t want the family exposed to the fumes. It should be an interesting night. Jodi and Robert had date night last night and they love just being together with each other and no one else.

Connie

April 29, 2008

April 29th

Jodi started with therapy again today. She fixed a pizza for dinner tonight, did the dishes and cleaned up the kitchen, put in some wash and took care of Ana Jain. After that, she was exhausted. It is hard for her to get back on track. She tires easily. Jodi has been telling us for a couple of weeks that she can swallow but we had no proof. Today her speech therapist had her swallow three small teaspoons of pudding and she managed just fine. We of course celebrated. Her walking has improved a whole lot. She walks with the walker everywhere and I am there only to make sure that she does not fall. I think that barring any further complications, she may be walking on her own in another month. Tomorrow we will take her to Cosco so that she can shop and push a cart around. She had a very slight bleed from the angio sight with all that she did today so we may not pressure her to do very much this week. We will play it by ear (or in this case “sight”).

Connie

April 27, 2008

April 25th

Not much to tell right now. Jodi is still taking it awfully easy until that angio site heals. We did manage to take her to see the show about Emma Smith (which by the way, I recommend highly to you) it surprised me by how well done it was and it is very factual and tender) Jodi loved it and together we shed a tear or two as we watched about the life of such a courageous women. We have had Jodi’s children here at the house most of the day and Jodi loves it when they come. The Dr. increased the feedings through Jodi’s “J” tube and that is causing her to have a little reflux and occasional nausea. We are trying to adjust the feeding accordingly but it may take some time until her stomach is able to tolerate much not alone her small intestine. The Dr. is trying to set Jodi up for a barium swallow test to see if she can begin to eat puréed foods. We hope she is successful. That’s it until Monday when she will hopefully begin her therapies again.

Connie

April 23, 2008

April 22nd

Remember Jodi’s rule, anything that can go wrong, will go wrong. Jodi went to her own home and did a lot of fun things. She gave both her boys a bath, dressed them, got them breakfast and cleaned some of her home. She was very tired when it was time to go to see her Dr. in SLC at the U of U. Before we left, she used the bathroom and we were surprised to see that she had started to bleed again from the site where they inserted the needle for her angiogram last Monday. It was not a huge amount of blood so I told her to put pressure on it until I got her to the U of U hospital to see the Dr. It had stopped bleeding but just to be sure, we had him check it after she had walked for him. Much to our surprise, it was bleeding-----A LOT. All of her underclothes were drenched and within minutes so were her outer clothes. They immediately applied pressure and then she was taken to radiology where they used an ultrasound to find out why the artery was bleeding. They applied pressure to the sight for about an hour before it stopped bleeding so that they could do the ultrasound. After, they decided that the best thing that they could do was continue to apply pressure while they watched with the ultrasound to see if it clotted properly. All together she spent four additional hours in the hospital until they felt that it had clotted enough for her to safely go home. They sent us home with emergency phone #’s and told her to stay off of that leg and not do any therapy for at least another week or until the sight appears to have completely healed and was sealed off with skin. It was scary but we were glad that when it happened we were already at the hospital with such good doctors and nurses to take care of her. More tomorrow.

Connie

April 21, 2008

April 21st

A good day for Jodi. It is nice to be back in therapy. She enjoyed the week off but got bored. Today, she did a lot of balance and upper body exercises for her trunk, and walked. For Occupational therapy she got herself out of bed, transferred to the bathroom, got dressed and ready to do her day, did laundry, and made a bottle for Ana Jain. She did all of this on her own. Tomorrow, she will get herself up and ready, go out to her own home in time to get breakfast for her children, feed, bathe, and dress them. From either the walker or the wheelchair, she will do some of her own laundry, clean some of her house, and then be at the U of U hospital for an appointment by 1:00 PM. This will be an especially busy and taxing day for her. She only has 14 more days with “Rehab Without Walls” and they want to get her as ready as possible to return home and be on her own. Not that she will be going home for a while but that is her eventual goal.

Connie

April 18, 2008

April 18th

Not much to report this week. Jodi continues to recover from her angiogram It has taken some time for her to stop bleeding and so she has not done anything that would prevent that healing. She will start rehab next week full force. She only has 14 days more to go with Rehab Without Walls and then she will have to travel to the U of U to go to outpatient rehab three days per week. I will not update you again until she starts on Monday.

Connie

April 15, 2008

April 15th

the angiogram went wonderfully. Jodi is back home today taking it easy because she is still bleeding at the groin site (small amount due to her high INR caused from the blood thinner.) She is in a great mood because the picture they obtained of the stint was so good. It showed that the stint was doing exactly what it should and that she was getting blood flow to all parts of her brain. The dissected arteries were healed and doing a good job. The Dr’s wanted to turn cartwheels. Dr Scalabrin, the Dr. who saved Jodi’s life was elated and told Jodi that at the year mark (November 29th 2008), she should be swallowing at least solid foods. She may have to get her fluids through the gastric tube for the rest of her life but she can live with that. Dr. Scalabrin also told Jodi that she may never get her face back to normal and that it will probably always droop on her right side. Jodi cheerfully said that “some things just don’t matter”. Will Jodi ever sing again? Only time will tell. She may always have issues with balance but that is ok as well. Jodi has an appointment with the Moran center to have lengthy tests done for her right eye. We will let you know how that goes. Last of all, the Dr’s have decided that Jodi’s foot will never get better until that surgery to lengthen the ligament is done. We are waiting until Jodi see’s Dr. Edgely on the 22nd.and then we will schedule the surgery. Jodi will have no therapy this week due to her having to take it easy. She will begin next week as usual. Thanks again for all your prayers, fasting and those who have been putting her name into the Temple. We love you We could not do this without your support.
Connie

April 13th

Jodi and I went to SLC to see the neurologist on Friday. He said that given the kind of stroke that she had as well as what part of the brain was affected, it is highly unlikely that she had a seizure. He said that it is not unheard of but not likely. As a result, Jodi will be having an angiogram tomorrow morning (Monday) at 11:00 AM. They will put a small camera into her groin and up into that stint so that they can see if the stint is narrowing. Because putting stints into that part of the body has never been done before, they are not sure how the stints will react. They are being extra cautious by doing this procedure. There are options for them if the stint is narrowing but we are all hoping that she just had that rare seizure. After all, she has had every other rare thing happen to her during this recovery so why not a simple seizure? I tend to think that it was a seizure because I was there and to me it had all the signs of such. I hope that I am right and that there is nothing more serious going on. Please keep us in your prayers. connie

April 9, 2008

April 9th

Wow! I am sorry that I wrote so little about what happened yesterday but it was quite a day. First of all, let me comment on what a good weekend Jodi had. Saturday, she spent a peaceful day with her children and Robert. She was able to watch Conference and then Sunday after Conference, she and her family went to her brother Jed’s home for dinner. After dinner, for the first time since she had her stroke, Robert took her out to her home. It was both good and hard for her. Good to be in her home once more but hard because her life has changed so much and she feels that she has missed a lot. Yesterday, she began her day as usual with lots of therapy. She did some PT and then for OT she made her family a pizza for dinner and cleaned up. Later, she folded clothes before we went to get her eyebrows waxed. She was sitting, having them done, when she began to complain of extreme nausea and dizziness. A minute later, she slowly turned her head into her right shoulder and her right arm extended out in back of her with her fist rolled back and up towards her elbow. The seizure lasted about 30 seconds. I had the manager call 911 and by the time the paramedics arrived, she was doing fine. Her pupils were responding normally and was oriented and had good speech. I was quite sure that she had experienced a partial seizure but felt that it would be wise for her to go to the ER and be checked out. On the way there, the ambulance pulled off to the side of the road and the paramedics who were in a vehicle behind them pulled up and the two men got into the ambulance. Apparently, Jodi’s B.P. dropped and her O2 saturation did as well. Her eyes had rolled back into her head and I am guessing that she had another partial seizure at that time. By the time she reached the hospital, she was doing well again. At the hospital, they tried for an hour and a half to find a vein so that they could give her a contrast dye to do a CT to look at the stints that were placed at the base of her skull back when she had the stroke. They wanted to make sure that the stints were not narrowing. They were unable to find a decent vein and so she has an appointment at the Uof U to have that done. She spent the afternoon in the ER and then was sent home (after consulting with Drs at the U of U and her primary care physician here in Ogden.) She now takes an anti seizure medication. By the way, it is not uncommon for victims of stroke to have seizures. There is no such thing as a “normal recovery” with Jodi.
connie

April 8, 2008

April 8th

Jodi had a minor setback today. She was out getting some beauty work done when she suffered a little seizure. It panicked me pretty bad and we had to have her transported via ambulance to Ogden Regional. Fortunately, right after and for the rest of today, she has been just fine. We have been told that seizures are to be expected after the trauma she has had and they placed her on preventive medication. Scared us, but she is fine and back home tonight reading every one's comments and making jokes. Hopefully this won't be a regular occurrence - the jokes and the seizure.

Connie

April 7, 2008

April 7th

Hi all Its me, Jodi. I just wanted to say hi and thank you for your support! It means a lot to me to have comments from you so keep them coming! Im doing better and would love to see more of you so just call me. Evenings work best.

Thanks!
Jodi

April 5, 2008

Foot Note

March 3, 2008 Hey everyone, I forgot to let all of you know that Jodi’s foot surgery has been postponed for a couple of months. I will let you know when she has it.

Connie

April 2, 2008

April 2nd

Jodi had fun playing a few April fools jokes. She gets a kick out of the funny things that her kids do and say or funny lines from movies. When she laughs, it makes us all laugh because it is such a cute laugh. She worked especially hard today with her therapies so I let her nap. She is also going to a movie with Wendy (her sister) and me tonight. Her first in 6 months. We will make her use the wheelchair to get into the main lobby of the theater and then walk up the stairs using the hand rail once inside the theater that is showing the movie. No handicapped seating for her! That would be too easy. She is excited. More tomorrow.

Connie

March 31, 2008

March 31st

Not much to report today. We spent a quiet weekend with family. Jodi continues to progress. She is looking forward to Thursday when she will ride the horses again. In the meantime, she made cookies for her kids, took a long hot bath, and did a lot of walking with both the walker and the crutches today. Her physical therapist is ill so Jodi will either have a sub for tomorrow or I will walk her through her daily routine. We do not want her to sit around. No fun or rest for the wicked (or is it weary?). One of her therapists wrote her a note stating the progress that she has made since she began working with Rehab Without walls. I will list it here so that you can all see how great she is doing.

1. Going from holding Ana Jain for only 5 minutes to nearly an hour.
2. Feeding, comforting Ana Jain when she is fussy and changing her diaper.
3. Helping to cook meals.
4. Attempting transfers with minimal assist from others.
Floor to wheelchair was max assist and now it is standby assist.
5. Sitting at the dinner table with the family even though she cannot eat.
6. Riding a horse. WOW! (She even wore a sash that said "hot rodeo queen"
7. Using the walker or crutches more than the wheelchair.
When walking, her gait is so much more controlled.
8. Taking baths, not just relying on the shower chair.
9. Went shopping at Wal Mart and Old Navy as well as Macy’s. (so her taste isn't improving)
10. Independent with grooming, dressing and using bathroom.
11. Balance and strength are so much better. Stands while she does dishes.
12. Noted improvement in her right cheek and eye. Not drooping as much.
13. Enunciation is improving. Vocal quality is clearer.
14. Decreased drooling which improves self esteem.
15. Able to read large print books. (couldn't read before stroke - just kidding)
16. Having date nights with Robert.
17. Increased communication of feelings to family members.
18. Great attitude, great sense of humor and WANTS to work hard.

All of this progress is so miraculous in our opinion. She has truly come so far from when we thought we had lost her, just 4 months ago; November 29th.

Connie

March 29, 2008

March 29th

Jodi’s horseback riding went so well. She was literally able to get on the horse by herself. We all cried. She rode with her hands outstretched like she was flying and was still able for the most part to maintain her balance. Her boys rode the horses as well and had such fun. She seems to feel better each day. Her boys have colds so we are trying to prevent a spread of germs to her. We hope that it works. Jodi does her speech therapy faithfully three times a day and her facial muscles have improved so much. We are all excited with her progress. I am going to try to take her to a movie this week. Hopefully earlier in the day before the crowds descend upon the theaters. It should be good for her.

Connie

March 26, 2008

March 26th

Jodi loves your comments. She has me look for them every day. She has done a lot of therapy today and started using crutches. She did quite well with them. She walks as well with them as she did with the walker. Which does not mean to say that she is ready to walk off into the sunset but she is at least better than we thought she would be. Her speech is getting leaps and bounds better but it is still sometimes hard to understand her. The muscles in her face are improving on the right side and her face sags less each day. Now if she can only get her right eye to blink. She is reading large print books and doing more with Ana Jain. Tomorrow she goes horseback riding. I will keep you updated on that.

Connie

March 25th

Jodi went to Wal Mart today and shopped for clothes for herself and then to Old Navy to get her boys some summer clothes. She used the shopping cart to practice her walking and did quite well. She is far from ready to do it on her own because she cannot sustain her balance but her gait has improved so much. She is doing a lot of face strengthening exercises which should not only help with her swallow but also will help her overcome the right side sagging of her face and help her control her drooling. She is really embarrassed about both of those things. She did crawling exercises with the big ball to support her and challenge her balance. Yesterday, we bought her crutches and tomorrow she will begin using them. On some days, we are so glad for her sense of humor. It pulls her through and keeps us laughing.

Connie

March 22, 2008

March 22nd

Jodi is doing several things that she has not done since the stroke. She is using a balance ball, crawling on her hands and knees, gets herself onto the floor from a sofa or chair and back again. She is beginning to have a lot of feeling around her damaged eye which gives her a lot of hope and her walking with the walker is improving every day. PT is planning to get her using Canadian Crutches soon (crutches that clamp to her forearm. Her spirits continue to be good, It helps so much for her to be with her family. She and Ana Jain are becoming fast friends and the bonding is going well. Today she will go to a family Easter egg hunt with her kids. She will not stay long because we do not want her to catch anything from us. Speech therapy is quite aggressive and she works hard at it because that is how she will get her swallow back.

Connie

March 20, 2008

March 18th & 19th

Another two good nights and days. Jodi did a lot of physical therapy, both with her therapist (who seems to know her business) and with me. She is doing exercises that will strengthen her breathing muscles (so that she can control her secretions and hopefully help her begin to swallow.) as well as hip, back and arm muscles. She will be making dinner tomorrow for her family with the help of her occupational therapist and she spent time on the floor with Ana Jain, changing her and other things to care for her. She will start next Thursday riding horses for occupational therapy. She also set the table, folded clothes, rinsed the dishes as part of her OT and worked with speech therapy. She has worked so hard the past two days. Robert and the boys come by every evening to have dinner with her and family time. Before Robert goes, they all sing a song and then have family prayer. It is good for her to be home (or at least in my home as opposed to the hospital.) Thank you all so much for fasting for her once more. We love you for it.

Connie

March 18, 2008

March 17th

March 17, 2008 It has been a pretty busy day for Jodi. She started therapy at 7:30 AM and then we had to be to the orthopedic surgeon by 1:00 PM. We then rushed to the DMV to get her handicapped tag for parking. By the time we got home, she was exhausted but doing well. She will be having surgery on her left leg and foot on April 2nd, to correct the contracture of her foot. She will be in a cast for four weeks and then she may have to wear a brace for the rest of her life. That was a shock to her but she is adjusting to the idea. Her children will be here soon for dinner and a few hours with her and Robert before bed time. She will be having speech and occupational therapy tomorrow. She still struggles with sleeping due to her having to deal with secretions which she would normally be swallowing, if she could. We take so much for granted. More tomorrow.

Connie

March 17, 2008

March 16 part II

It is so nice to be home. Jodi is still adjusting but doing great. She is having the opportunity to be with her boys every night and she loves it. Little Ana Jain comes over in the afternoon and squeals and giggles then when she gets tired, Wendy takes her home. That is giving Jodi a chance to bond with her and vise versa. Jodi’s first night was difficult because she had a little trouble breathing with all of her secretions but last night was much better. Please continue to pray for her swallow to improve. She begins therapy with Rehab Without Walls tomorrow. We wish her luck. We hope it is all it is cracked up to be. I will keep you informed.

Connie

Note from Jodi - March 16th

Jodi says, Thank you everyone who came to my mom’s home to celebrate my home coming. I was so overwhelmed with the love that all of you showed. I am amazed everyday by how much you care. I want to work harder to get better so that I do not disappoint any of you. When I get down and think that I will never get there, I think about how much all of you are cheering for me and it gives me as reason to keep going.

I love you!!!! Jodi

March 13, 2008

Celebrate!!!!

Jodi will be home tomorrow (Friday) night around 6:15pm. We would like everyone who can or would like to, to please come to my mom's house, just around the corner from Wendy's @ 6:00. When Jodi comes home (to my mom's house) we'd like it to be a celebration of all that she has accomplished over the last 2.5 months. Feel free to bring your welcome home signs or whatever. We'll only be able to stay for a few minutes so we don't overwhelm her. Please spread the word!

Wendy's Address
3911 S. 900 W.
Riverdale

Connie's house is one street west of Wendy's, across from the Riverdale Stake Center.

Please call me if you have any questions. 801-910-1912

MB

March 12, 2008

March 12th

Jodi was strong and active in all her therapies. Dr. Edgelly let her know that barring any problems, she will be going to my home on Friday. Yeh!!!! Her children came to see her tonight and she assured them that she would be coming home soon. She is optimistic, happy and looking better than she has in months. Tomorrow, we will be taking a home visit to my home with the therapists to see if all is prepared for her to leave the hospital. Monday, she will begin therapy at home with a group called “Therapy Without walls”. We are told that they are a very aggressive group that can meet Jodi’s needs. She will have therapy every day.

Please remember that if you want to visit her that you must not stay more than 10 to 15 minutes and please remember to come without your children. Please call first. My phone number is--- 393 2963. She will be tired after her therapies and will need her rest. Please do not come if you even remotely think that you could have a cold or flu symptom. We MUST keep her healthy. Thanks again for all your prayers and comments. Connie

March 11

Monday, March 11, 2008 It is early AM and Jodi is still asleep. Yesterday, she was doing so much better. It appears that the tube inserted into her small intestine is doing its job. She does not aspirate as easily and all chest x-rays show improvement. They are going to send her back to rehab today and we are hoping that this setback will not hurt her chances of going home this Friday. She is still hesitant to believe that she will ever progress past the point that she is right now. Robert and I just think that we have talked her into believing that she will when she dips into a little depression and is not sure that she can trust us. She keeps telling us that she will stay in a wheelchair for the rest of her life if she can just swallow. She is miserable because she cannot control her secretions and she cannot eat or drink. She is making progress in that area but she cannot see it. Hopefully, it will be a good day for her. I’ll let you know how it goes. Connie

March 7, 2008

March 6th

You would think that I would by now recognize the pattern with Jodi. If she does well for a day or if she sets a date to go home, something is bound to happen and it did. Last night, I received a phone call saying that Jodi had aspirated some of her tube feed. It seems that her stomach went to sleep during the time that she had the flu and it has not awakened yet. As a result, she cannot assimilate her feedings through the gastric tube. Instead, the nutrition is regurgitated to her mouth (not good since she cannot swallow and fluids only go into her lungs.) It took the nurses two hours to get her stable enough to send her up to Medical ICU where she underwent a procedure to replace the gastric tube (goes directly into her stomach) with a tube that goes into her small intestine (where most of the food absorption goes on anyway).
That should prevent any further aspirations from her stomach. She is actually quite positive and In good spirits. She is loved by all of the nurses and aids on the rehab floor and when I went there to get some of her stuff, I was surrounded by them. All of them talking at once with love and concern for her and telling me that they were holding her room for her. I met with her therapists (some of whom cried when they found out) and they are coming to visit her this afternoon to cheer her up. She loves them as much as they love her. Keep Praying, some day all of this will be over. We hope this does not delay her March 14 departure date.
Connie

March 5, 2008

Tuesday

A much better day today. Due to the stroke and the things that it does to the brain chemistry, Jodi has been on an anti-depressant since the stroke occurred. When she began having nausea with the flu symptoms, I requested that they not put anything into the peg tube that might irritate the stomach. As a result, they discontinued all medications that had to be put into her stomach through that tube except Plavix (protects against blood clotting). When she got better, they resumed her meds . However, they messed up and forgot to give her the anti-depressant. She has been without it for about a week. That is a lot of the reason why she fell apart. Today was up and down emotionally for her but more up than down. I expect that she will improve each day until she is back to her old self. What would we do without modern medicines?
I think that she is getting better with her swallow even though it is in minute degrees. Today she controlled her secretions much better than two days ago. She participated in all therapies except the last only because she got quite nauseated. When I left her, she was with Robert and doing very well. Her new go home date is March 14th.

Connie

March 4, 2008

Sunday - Tuesday

Jodi has had a rough couple of days. She is struggling without her trach and her inability to March 5, 2008 Sunday, Jodi aspirated again. She took a taste of apple juice with ice chips and got some down her lungs. The choking caused her to throw up her tube feedings and she aspirated those as well. It was an awful setback. Now who knows when she will be able to come home. They want her to be able to swallow and manage her secretions. If she had done this at home, she would have died. I would not have been able to help her. As a result of the setback, she is so mentally down. She cried and yelled and said that it would have been better if she had died. I have been expecting this depression much sooner than this and I know that this is a normal reaction to all she has been through but it is extremely hard on Robert, his parents, and us to see her like this. Last night, her brother Josh talked to her and she said that she realized that she has no other option but to keep working even though she just wants to give up. Sorry to write such bad news but I must report the bad with the good. Please keep praying for her as usual. It would be nice if you could ask Heavenly Father specifically for her to begin to swallow. We so appreciate all of you and how you care.

Connie