Prayer Needed

Hello Friends,

Mom is not doing well right now and she really needs your prayers.  She was doing very well up until about 10 days ago, when she started feeling badly again. She feels about as bad as she did in December and January.

Dr. E said several weeks ago that she may have to stay on this medication for the rest of her life.  She didn't like that, who would really? So she and Kim are seriously looking into surgery options.  Dr. B (a new pain management doctor) thinks she would be completely well with surgery, but he wants her to go to Nacogdoches for the surgery and get out from under the 'Houston Umbrella' of doctors.  She does have two good referrals that are local and she will be seeing them all over the next few weeks.

I will let you know in June how those appts go. But in the meantime, please keep her in your prayers. She is trying to maintain a somewhat normal life, but her legs hurt so badly that some days she just has to rest all day.  Her legs feel like heavy weights are attached to them and they are in constant pain.  The pain meds aren't as effective as they once were either.

She would love to hear from you if you would like to call or stop by for a visit.

Stacy

Much needed update

Hi Family and Friends,
I've been meaning to post for days, but as the school year draws to a close, the hours in my day seem less and less.

Mom had a bit of a set back. She has rosacea on her face (dry red patches) most likely from all the meds she's taking.  So the doctor put her on an antibiotic for it.  That led to her getting Thrush in her mouth.  Then she started having trouble going to the bathroom and the meds the doc gave her for that made her sick and that set her back even farther. She was in bed for several days after that episode.

She's feeling better now, but her legs have been hurting her more, so please pray for that.

Also, she did see a new doctor that said she needed surgery. Of course this was a shock because no one else has really said that recently.  She went to this new doc, Dr. B, for therapy and he instead throws out having surgery.  Mom and Kim didn't really know what to make of that, but he insists she can get better with surgery. 

Please please pray that God will lead Mom and Kim to make the right decision about surgery and if they go that route, that they will find the right doctor, etc.... right now, we are just exploring the possibility, and thinking it through, no plans have been made yet.

We may just stick with therapy for now.

Please continue to pray for her and for Kim.  Mom has an appt. with Dr. E on Monday and will be driving herself. She doesn't want us to go with her.

G'Night!

Lots of New things....

Well, I haven't posted recently because I've been waiting for mom to get another test done and get the results back and go to the new doctor, etc, etc, etc... and after I got all that info back, Lucy got sick and then Daniel got sick (those are two of my kiddos for those of you that don't really know me) with a stomach bug. Fun times.


I went with Mom several weeks ago to see Dr. E.  It was another really good visit.  Mom has still been having shoulder and arm pain and we asked him about it. He ordered an MRI of her shoulder (that's the test I was waiting on).  The results showed that she had a tear in her rotator cuff and a SLAP tear (Danny said that's from slapping Kim around ;) ). She went to see Dr. S who is an orthopedic surgeon. He confirmed the tears and that she has calcium deposits (bone spurs) in the joint of her shoulder.  He also said that her shoulder is in constant pain and making her nervous system continue its pain cycle, which in turn makes her medicine not work as effectively as it should be working.  Dr. S will not do surgery until he has done three steroid injections in her shoulder. She had the first one last Thursday.

Tomorrow, Monday, she and Kim will go to a Chronic Pain Clinic. They have a lot of different types of therapies there and we're hoping that they can help her somehow.  She was doing water therapy on her legs and her arms, but it was causing her more pain in her arm. That's what prompted us to ask Dr. E about her shoulder.

Thanks again for all your prayers.  Mom asked that you pray for her muscle spasms and the trembling that she has all day long.  She also wanted me to tell you that she prays for all of you everyday.  She said that she prays over her prayer warriors.

I'll try and post something this week about her appt. tomorrow and her appt. with Dr. E that she has on Tuesday.

Stacy

Plain ole update

I took Mom to see Dr. E on Tuesday because Kim had an important meeting to attend. I haven't been to one of her appts in a while. The doc was pleased with her progress.  She's been doing water therapy for a couple of weeks now, maybe three at the most.  It's going really well and it's definitely not as hard on her body as regular therapy.  She forces herself to go even when she doesn't feel like it.


Mom was having some new symptoms and Dr. E explained that they were all therapy related, which was GREAT! At least I thought it was great.  He explained that most of what she was feeling was from actually using her muscles and some of it was side effects from the medicine she's taking.  Her muscles won't always react the way a normal person's would after going to the gym, being sore, etc... Her muscles will react with pain.  Vicious cycle!

Mom's been having trouble with her right arm and she will be having an MRI on her shoulder soon to make sure there isn't something else wrong with it. That's one thing she hasn't had tested yet! 

Please keep the prayers coming! You can pray for her therapy to keep going well. Pray for the 'break through' pain she feels from the therapy to be controlled by the meds. She's been driving too, so pray for her to make it safely to and from her destinations without any problems.  Right now, she has a sinus infections, so please pray for her to feel better from that ASAP. This is the first time since all this started that she's gotten this type of sickness. That's amazing because Lucy and I have been over there several times when we have been sick.

Mom gets a bit lonely at times, so feel free to call her for a chat.

Oh, I almost forgot! She's been cooking too! Well, baking really. She did make Kim some Lamb Soup the other day. She also has made a few desserts in the last couple of weeks. 

Cookies!

The kids and I went to see Mom last Tuesday (we go see her every Tuesday) and she had sugar cookies all ready for the kids to cut out and decorate. They had lots of fun with her.

 

 

This week she went to eat lunch with us and then we went to Target for awhile.

Just like everyone, she has good days and bad ones.  She's is determined to get better though. She started doing aqua therapy last week and it seems to be going well. It's not as hard on her body as the regular therapy. 

Quick update

Mom is having good days and bad ones too. She's on a new medicine that will help with the trembling/shaking that her muscles insist on doing. It seems to be helping for the most part.

Her sweet brother, Wayne, surprised her last week and came in for a visit.  It was really good for her and lifted her spirits a lot.

Thanks for your continued prayers! If you'd like to stop by for a visit, I'm sure she'd love it!

Prayer Request

Mom asked me to post a note and ask you to pray for her this weekend.  The physical therapy was not good for her this week. The therapist apparently worked her neck and wasn't supposed too. She failed to contact Dr. E (the Houston doctor) before starting therapy on Mom.  So mom has been in a lot of pain this week and getting worse.  She's had a lot of pain in her arms and legs and is limping again. She's also shaking quite a bit. 

Tonight she talked with Dr. P from the Mayo Clinic and he was very upset that the therapist worked on Mom's neck and wanted her to see Dr. E immediately. Of course, it's Friday and Monday is a holiday.  Dr. P wants her to go up on her medication dosage. She's been going up on it very slowly (in 5mg doses) because it's had some nasty side effects before when she took it in larger doses.  But tonight she's going up 10mg and wants everyone to pray that the side effects are minimal and that this dosage increase helps with her symptoms.

She was really doing well on the medication before she started PT last week. At Christmas she really was feeling great.  And now she's scared because a lot of her symptoms are back.  Hopefully the dosage increase will help.

Thanks for your prayers and please let me know if you have any questions.  Feel free to post messages! 

**I know some of you are having trouble and I'm not entirely sure why.  But you should be able to click on the word 'comments' (if you don't see the comment box already).  then type your message and underneath the comment box you will see 'comment as'.  select 'name/url' or 'anonymous'  then click on the gray comment button.

Have a great weekend! And thanks in advance for your prayers! Mom really covets them.

***On a personal note, while your praying for Mom will you please say a prayer for some dear friends of ours, they lost their baby this week. She was about 8-10 weeks pregnant. I know they would appreciate your prayers too.

Christmas Photos

Here are some photos we took on Christmas Day. 

Physical Therapy and Driving!

Sorry that it's been awhile since I posted anything about mom.  Please feel free to email me if you want to know how she's doing: purplestacy@mac.com

We had a great Christmas. Mom's sister, Sharon, and her husband, Stan, came down for a visit.  Mom felt really well over the holiday season.  She and Kim even went out for New Year's Eve! 

She started physical therapy (PT) the last week.  It was rough on her. She had lots of break through pain and shaking.  They went today and talked with the therapist and decided to wait awhile before starting back up again.  The therapist said that Mom might not of had enough time to heal before starting the PT.  She said that they see women all the time that have had an epidural during childbirth and have back pain from it.  So even though she's been bedridden for months, she wasn't able to really heal because of the chronic pain. So after a few weeks she's start back up.

For now, she'll walk in a heated pool that's not far from her house and walk around her yard. 

Last week she drove with Kim in the car up to our house which is about at 25-30 minute drive.  Kim said she did great and gave her permission to drive short distances. That was a boost for her because now she doesn't feel confined to the house.

That's it for now. Please continue to pray for her recovery. It will be a slow one, but all the doctors and the therapist all say she will get better, it will just take awhile.

First Outing

Good Evening!
I just wanted to update you really quickly on mom's condition.  The new medicine is really starting to help. She is doing really well. She had a great week last week and even did one day of physical therapy.  She will start regular PT in January.

On Sunday, her good friends David and Dianna were singing at Second Baptist West Campus and since that is right across the street from her house, we all went. Danny and the kids and I spent the afternoon at the house and then went with her and Kim to hear the music.  It was a great performance as always.

Mom also had new ornaments for the kids to hang on her tree.  I've included pictures below.

I'm sure she'll read this and get mad at me if I don't tell the story behind her Christmas tree.  I hate 'blowing my own horn', but while they were at the Mayo Clinic, I mentioned to our friend, Mark, on Thankgiving Day, that I wanted to hire him to decorate my mom's tree for her.  He is a talented Christmas Tree decorator and I knew he could make it look like she did it herself.  He said the only time he had available was the following morning. So we decided to make it a surprise. I gave him the key to their house and Mark, his wife, Mary Jo, and my mother in law, Karen, all went over to Mom and Kim's and decorated their house, and tree for them. When they got home later that day, there was a big surprise waiting for them.

It was a ton of fun surprising her and Christmas is her favorite time of year and I knew Christmas just wouldn't be the same if her tree wasn't up. It already was going to be different anyway.

So, THANK YOU to Mark, Mary Jo and Karen for decorating Mom and Kim's tree.

Mom did really well at the concert.  She got to see several of her friends there too.

Thank you for your continued prayers.  The medicine really is starting to work better and we are so grateful that God has allowed it to work.  Please don't stop praying, she has a long road ahead of her with the therapy starting in January.  My prayer is that she'll have some sort of 'normal' by the beginning of the summer.

Merry Christmas!

Some Improvement

I went over to Mom's house yesterday. She wasn't feeling well and needed some company.  Later, Kim called and told me to get her ready to go to the doctor's office. She didn't want to go, but complied. 

Here is what happened at Dr. E's office:

*She hasn't had the electrical stimulation therapy since last Thursday. She thinks it was making her feel bad, but we aren't sure.  She will try it again later.

*She is on a steady dose of the new medication for now. She'll increase it later, probably in January.

*She does have bruising and scarring on her spinal cord that is permanent. At this point she cannot have neck surgery of any kind because of the condition of her neck.  The only reason they would do surgery is if she was in danger of being paralyzed.  She's not there, yet.

*She does have Chronic Pain Syndrome (CPS).  It started in the neck and has traveled around her body because it was left untreated. Most patients with CPS have more severe pain and symptoms at night (which is the case for Mom).

*She has to work through the pain so that she can get to physical therapy. She starts that hopefully on Friday, December 18.

The visit with Dr. E. was EXCELLENT.  We had a lot of questions answered and we all left feeling hopeful.  Dr. E said that he already thought she was getting better.  I asked him upfront if she would get well and he said yes. She does that the permanent damage to her spinal cord and her reflexes are 'brisk'. That will also not ever go away.  The physical therapy will last 3-4 months. 

She's trying to focus on other things now. She is listening to music and CD's of her favorite preachers.  She also met us at the door today, already showered and dressed. She was more active today than she has been and tonight is not doing to badly with the help of her pain medicine. 

here is how you can pray for her:

*pray that she sleeps at night. i'm sure you know how awful it is to be exhausted and not be able to sleep. She has been waking up several times a night in pain and discomfort with the spasms.

*pray that she is assigned the right physical therapist, and can continue her treatments here in Houston without having to travel back to Mayo Clinic for their rehabilitation program.

*pray that she will be able to stay focused on the improvements she's seeing and not on the pain.

*And pray for Kim too. He's doing such an amazing job taking care of Mom, but it can be exhausting.

Please feel free to leave a message. Mom and Kim both read them.

Therapy

Sorry I haven't updated in a while. I've been busy and there wasn't really much to report.

Mom continues to be in horrendous pain. She has good and bad days. She is much worse in the evenings and better in the late morning and afternoons. I do think the medicine is starting to help some. She would probably disagree, but I can hear it in her voice. I've tried encouraging her to listen to Christmas music to help get her mind off of it and on to the birth of the Savior. 

Today she starts day 1 of a ten day electrical stimulation therapy.  We're not exactly sure what this will do, but the physical therapist at Mayo said that it wouldn't hurt Mom and to let her know how it went. It may or may not help.  We'll have to wait and see.

She would love to hear from you that know her personally or if you just want to call her and tell her you're praying for her. She is in so much pain that it doesn't cross her mind to all people. But feel free to call her. If you want her number let me know.


She will hopefully be starting regular physical therapy the week before Christmas, if she's up for it. But I'm thinking it will be more like January.  She will need help getting to and from the PT, so if you would like to help, please let me know.


We appreciate your prayers! and love you all!

Visiting

Good Evening.

Mom and Kim both wanted me to let you know how much they appreciate your prayers. Mom said that they felt them and asked you to not stop praying just because they are home now.

While you're praying, I would ask you to pray for my family. Lucy and I have been sick for almost 5 weeks now. Danny got sick just before Thanksgiving and now Daniel seems to be coming down with it too. The icing on this cake though is that Lucy now has Hand, Foot, Mouth disease.  Awful sores in her mouth and on her hands and feet.  Please pray for us to get well. We can't visit Grannie until we're all better.

Since we can't visit her, she wanted me to let you know that she will be home alone most of the time and if you would like to come over and keep her company for awhile during the week, she would love to have someone to visit with her.  Having someone to talk to helps keep her mind off of the pain. She can't do much for herself so she can get pretty lonely with nothing to do and no one to talk too.  *She does want you to call her before you come to make sure she is feeling okay that day. Some days are really bad and she just doesn't feel like company, but most days are good.

If you'd like to sit with her, just call and let her know when too. If you need her phone number you can email me privately and I'll give it to you. purplestacy@mac.com

A Diagnosis and a Home Coming

Tonight's posting is just a bunch of information. Let me know if you have any questions.

The test results from the EMG's were normal. She had a nerve conduction test done as well this week. It starts in the foot and runs up to her head. Everything was normal until it got to her neck, then it slowed way down and the returned to normal after passing her neck.

Much of today was spent waiting to see the neurosurgeon.  Someone finally came out and said that the head of the Neurosurgery Dept. reviewed her case and the MRI's that were done this week and agrees that she does not need neck surgery. None of the symptoms she is having would require surgery.

Here's what she does have: Cervical Myelopathy or Cervical Stenosis
(the name on the website link is different than what I put here, but it's basically the same thing)

The neurologist said that the muscle spasms and weakness she is experiencing is caused by the pain. It's a vicious cycle.  They have given her an older medication for the pain and should stop it. She will take it for two weeks and then start physical therapy here in Houston. It could last 7 weeks or more. And it's possible that it could take about the same amount of time that it's taken her to get this way.


The neurologist she has been assigned to is very nice and she really likes him. He told her that she could come back if she didn't feel she was getting better.

She didn't say this exactly, but I could tell that she's both relieved and depressed at the same time. She didn't want neck surgery, but she was hoping she'd need it because it might make her better faster, but she also has a treatment plan and a slow recovery.  She didn't want to come home with just medication and physical therapy.  She wanted something different, although no one is sure what we really wanted to hear. Does that make sense?

They are coming home on Friday as planned.  Please don't call or come by until next week.  She'll need the weekend to recover from the trip home. 

You can post messages to the blog by clicking on 'comments' (if the comment box is not visible on the page). Then you will probably need to scroll down to the comment box and  type what you want to say. Next, where is says to 'comment as' select 'anonymous'. Then click on 'Post' and you're done. 

OR you can send her an email to: aussiequinn@yahoo.com / You can also send me what you want to say and I can post it to the blog: purplestacy@mac.com 

Just be aware that she cannot personally respond to your emails because she cannot type on the computer. It's too painful in her arms and her hands.

She and Kim both would love to hear your encouraging words and how you've been praying for them.

Thank you all so much for your prayers. I will continue to post a few times a week on how she's doing with the pain and the physical therapy. 

New Testing / Kim's Birthday

Today Mom and Kim spent much of Kim's birthday visiting various doctors.  The neurologist wants to do repeat MRI's of her brain and cervical spine.  Apparently the one she had done here were not extensive enough and the radiologist wants too see more.  These tests will be done tomorrow (Tuesday) or Wednesday. Please pray for her during these tests. She has to lay perfectly still during them and it's very hard for her to do and can be painful for her as well. She usually comes out of them feeling very stiff because she had to be still for so long. And they are two separate tests.

She also saw a couple of rehabilitation doctors that were both female and they both agreed that her spasms and muscle contractions and now jerking are being caused by her brain and spinal cord not signaling each other properly.  They said that with medication and physical therapy similar to what a stroke victim would go through, she would get better.  That is if she doesn't need surgery. They also said that there is possibly a place here in Houston where she could get the therapy.

A neurosurgeon will review her files and records and history and determine if she needs any type of surgery. She will only see the neurosurgeon if that doctor wants to see her or feels she needs surgery.

The neurologist said he would not let her leave without some kind of help. That was encouraging.

Mom asked us to pray for supernatural wisdom for the radiologist reviewing the MRI results and for the neurosurgeon that will look at her case. Pray that God would guide them to a diagnosis, because there still isn't one.  Pray that God would open their eyes to see what other doctors have not yet seen and for whatever is causing all of this to reveal itself during the testing.

HAPPY BIRTHDAY KIM!  (a.k.a. Granddaddy) We love you and miss you both terribly!

Feel free to leave your own message in the comment section below. Mom and Kim both check the blog everyday and would love to hear from you! (PS: don't forget to wish the old man a Happy Birthday!)

Feeling Better

Mom is feeling a bit better today, mentally and physically.  Kim took her to get her hair done and the lady tilted the chair back without any warning and it really hurt her neck and back.  That makes mom think that the rheumatologist is right and that it is her neck.  She has a couple of appts. tomorrow and hopefully those will yield positive results.  The EMG results should be in tomorrow as well.

Tomorrow is Kim's birthday. So post a comment below and wish him a Happy Birthday! I won't tell you how old he is, but he's old! LOL!

Good news Bad news

I just talked to mom and she did not get the results of the EMG today like she thought she might. She'll have to wait until Monday.
There is good news and bad news:

The good news is that she did get into see the Rheumatologist today and he spent 2 1/2 hours with her.

The bad news is that he thinks the problem is with her neck, shoulder, and rotator cuff.  This was VERY discouraging to her and to Kim.  They were very much hoping for a PMR diagnosis and could go home early next week.  But this to her is a huge set back.

This whole thing started with her neck and the doctors claimed that her 'small' problem couldn't cause these big symptoms, so it MUST be a neuromuscular/neurological disease.  AND now we're back to the neck. She's devastated. 

The Rheumatologist did say that her 'small' problem could cause her big symptoms, and since most of her symptoms are more on one side of her body, that it was very unlikely that it was PMR and that it was more mechanical.  He showed her image after image of patients that were diagnosed with PMR and ended up at Mayo because they weren't getting better and it turned out to be a neck problem. He said that if it was PMR that she would be dramatically better on the steroids already after two weeks.

He wants her to start physical therapy on Monday and she will return to the neurologist also.  He also wants her to see a near-surgeon there as well. Oh, and he wants to take her off of the steroids too. That was really hard for her because she was feeling so much better on them.

She and Kim are both very upset and asked me to tell you all not to call her. They don't want to talk to anyone right now.  I think since they were hoping to come home on Tuesday and now they aren't, it's a little more upsetting. (i for one, never thought they'd be coming home that quickly)  And they aren't there to come home quickly, they are there to find out what's wrong with Mom, so I don't care how long they have to stay.


Please keep praying.  We were hoping that once she was at Mayo that ALL the doctors would agree and since they aren't agreeing, it's kinda hard to swallow.

Nothing new really

I talked to mom again tonight. She had blood work done today and basically waited all day to try and get into see the Rheumatologist or have her EMG.  But alas, it was not to be. Her EMG is tomorrow at 8:45 am, but she has to be there at 7:30! yikes.

She sends her love and thanks everyone for their prayers. She can feel them.

Her symptoms are changing somewhat. She's starting to tremble and shake more now than before. And she's having to take more pain medicine than she'd like too. But somehow she feels like the steroids are still working because she said that she wouldn't have been able to make this trip last week.

Keep those prayers coming!

Update 11/18/09

I just got off the phone with Mom.  She's feeling better and thinks that the steroids are starting to help. She said that the place is amazing and it's so beautiful and everything is decorated for Christmas already. They have a very nice room and feel very comfortable in it. (This hotel caters to Mayo Patients, so it's not like a regular hotel room)

She met with the neurologist today and he was very nice. He spent a long time with her going over all her history.  He thinks that she possibly has a neuromuscular or rheumatological disease that was dormant and that she would have gotten anyway, but the injury to her neck brought it to the surface quicker.  He is sending all of her MRI's to the radiology dept. to have them checked over for anything the Houston doctors might have missed, but he doesn't think she needs neck surgery.

Tomorrow she will have more blood work done to check for things that only Mayo Clinic check for, and for things that haven't already been done.  He wasn't specific only to say that he's checking for neuromuscular and rheumatological diseases.

On Friday, she will have another EMG. This is a test where they place needles all over your body to see how your muscles respond.  This will be the third one of these tests she's had done. It's a painful test, so please be praying for her on Friday for sure!

Then, next Wednesday, she will meet with the Rheumatologist. Well, that's when her appt. is. She will 'check in' everyday with the dept. to see if someone can get her in earlier, but if they can't, then she will definitely see someone next Wednesday.  Then, she will start physical therapy on the 30th.  The neurologist said she can't just keep laying around. So once they have a diagnosis, they will start PT based on that.  He said that not using her muscles is like a vicious cycle. It took her a long time to get to this point and it will be a long time before she gets back to normal, but he said that she will get back to normal. (yea!)

The important thing is that he feels confident that they will get a diagnosis, and that is encouraging.

We're sad they won't be here for Thanksgiving, but I'm glad she's there. We all know that God is in control and He is Sovereign. We just have to cling to that right now while we wait.

Again, thank you all for your prayers. I know my mom appreciates it and covets them.

The Second Email I sent out

I didn't expect to be writing you to again so soon, but our God, He's truly amazing! He worked a miracle and got us an appointment with the Mayo Clinic 3 weeks early! Mom's original appt. was December 7th, but now she's leaving this coming Tuesday for an appt. on Wednesday, November 18th!
PRAISE GOD PRAISE GOD PRAISE GOD!!!!!!!!!

We are so happy and so hopeful now. Thank you for your prayers! Please keep praying for my mom and pray for the doctors that will be treating her too, and the flight up there.

Singing His Praises!,
Stacy