One month from today....

This time next month Jordan will be have the first surgery of the Cross Facial Nerve graft surgery with Dr. Tessa Hadlock in Boston!  Jordan is very excited and is looking forward to the final result, even it that final result will be 12-15 months from now!  I am so thrilled for her to get this started but yet very nervous/anxious for her! This will be her 3rd surgery this year and I can't help but worry!  Everyone has had lots of questions and I am going to try and explain it the best that I can.

The surgery next month will require moving a sensory nerve from the back of her calf and moving it to the RIGHT(good) side of  her face. When this is done the nerve will then be spliced into the base of the facial nerve on the right side. Once that is done it will then be pulled over her lip to the LEFT side of her face. The picture below demonstrates this process. They will then close her up and let the nerve heal and regenerate until summer. Then the 2nd surgery will occur( more on that later).  This surgery will be about 4 hours and will require an overnight stay. The goal after this surgery is during the healing/regeneration period she will begin to have some feeling in the LEFT side of the face. So once again while she is on break from school, she will be recovery from another surgery.



As you can all imagine this is a very exciting time for Jordan & all of us! The blog will be updated daily while we are in Boston and following surgery!  Please keep Jordan & our family in your thoughts & prayers during the weeks ahead!

Getting back to driving......

Just wanted to let everyone know that Jordan officially started driver's training this week! She will take at least 10 hours of training before she is cut loose!  She is so excited & nervous about being back on the road and she can't wait to have this part of her independence back!!  I hope my nerves handle this better than when she was 16!  

Angels among us.....

When this journey started in May 2012 we knew that we wouldn't be able to do it without the help of family, friends, acquaintances, and complete strangers.  There have been times during the last 17months that we could not have made it without that help.  Today I want to say thank you to EVERYONE that has helped us either by prayer, food, emotionally, and financially.  All of your help has allowed us to keep our focus on Jordan. As we begin down another path of this Journey I was reminded yesterday that people cross our paths for a reason. I want to thank that special person that crossed my path yesterday via a mutual friend  for a wonderful gift to our family!

 Boston is getting closer by the day and we can't wait to get there to start the next part of Jordan's Journey. Please continue to keep Jordan & our family in your prayers.  PRAY FOR JORDAN

Finally has the Prism!!!

With everything going on I totally forgot about posting an update about the eyes!  On the 7th Jordan saw Dr. Bradley and her new glasses were fitted with a prism! Unlike most prisms this is just fitted over her lens and in her words "this makes it MUCH MUCH better"! Below is a picture of her with her new specs and she also wanted me to post a picture of her scar(17months post op)  They took some adjusting to but she seems to be doing great with them!  She is also  looking forward to seeing Dr. Stephens in November to see what she recommends.  

                                                                      New Glasses :)

17months Post OP

BOSTON BOUND!!!!!!!!!!!!!!!!!!!!

WHOO HOOOO!!! Today we received the final approval from the insurance company so that means we are BOSTON BOUND come December!! Think I just might have to buy me a new hat for this trip :)    Jordan is on the schedule for December 18th to do the 1st step of the 2 step procedure! I will update more once we get closer to the date!!

PRAY FOR JORDAN!!!

It's the little things....

Most of us take for granted the little things in life.  The below is a conversation that Jordan & I had on text messages today.  Jordan: You would be so proud of me today ME: Why?  Call me!!  Jordan: I put eye drops in this morning.  Myself :)   Jordan: YEAH!!  I am so PROUD of you!!
Of course this made me cry happy tears!  It has taken her 16 Months to be able to do this by herself & this little step was a HUGE one.  So the lesson here for all of us is to NOT take the little things for granted!!
Please continue to say prayers for Jordan..we are still waiting to hear from the insurance company about Boston!
PRAY FOR JORDAN!!!!

Lots of updates....

Well Jordan had her drivers evaluation a couple of weeks ago and it went great!!!  They used this neat thing that places the gas pedal on the left side of the brake! She did great with it! Looks like  she will only need to that one vehicle modification for her to be able to drive! So now we will wait to hear from Voc Rehab to make sure the training/modification will be approved!

Today we are seeing Dr. Bradley! Unfortunately, Jordan's eyes still aren't giving her the results that we were hoping for. Looks like Jordan would need 3 pair of glasses, one for near,one for distance, and one for driving. In KY you can NOT drive with prisms in your glasses:( This is NOT the best scenario!!  Botox was discussed but before we do that we will see another MD to get her opinion. I think we need a secretary to keep up with all the MD's we see!! Any volunteers?!?

So today she will get a script for glasses(near) with a detachable prism.  This is very disappointing for Jordan and for me as a Mom I just want to sit down and cry! Seems like for every step Jordan takes she gets pushed back 20! My girl needs a break! 

On another note we have asked for approval for the 2 step surgery by Dr. Hadlock! Keep all your fingers and toes crossed that this will happen!

PRAY FOR JORDAN!

1st week of school & MD update...

Jordan has the 1st of school under her belt and she is already very busy studying! The rad sciences program is very demanding & she is up for the challenge! 

Yesterday Jordan also had a scan & saw Dr. Fraser for a follow up visit.  As I had mentioned before Jordan has been having issues with her right leg shaking. This has came up and gotten worse since surgery last year. Jordan has what is called hypertrophic olivary degeneration that is causing the shaking in her leg. This should NOT get any worse and is something she will always have. He said there is medicine she could take but for now Jordan has decided to not take anything. Overall it was a good report & Jordan doesn't have to see him for ONE year! 

On another note for all of you that have found the blog by trying to find out information on Angiomas or another medical issue & have contacted us, Jordan says thanks for the emails!

Until the next update..PRAY FOR JORDAN!

Whirlwind of a week...

Well this week was a bit crazy with everything Jordan had going on! So let's start the update with Monday! Monday we meet with Voc Rehab to get the ball rolling in rehab for drivers training. Jordan is very excited about this because as most of you know she hasn't driven since April 2012! She wants that independence back! We did find out she qualifies for $10K in vehicle modifications if need be and for the rehab to be paid for by Voc Rehab! Finally she qualifies for something:-) 

Tuesday was surgery follow up visit with Dr. Bradley. The results were not what we were hoping for and she is hopeful that there will be more improvement with time. The eye is straighter but isn't moving like we were hoping for after 2 surgery's. We will see her back in one month for her to give Jordan the eye glass prescription. 

Now Thursday was move back to Morehead day!!! It was a crazy day but lots of excitement for Jordan! Her roommates are great and seem more than willing to help her out & that makes me feel much better about leaving her there!  Monday she will start classes & her major is Radiology Sciences! She is very excited about it and can't wait to get started! 

This week we also submitted to insurance to obtain approval for the 2 step procedure in Boston by Dr. Hadlock. We are praying this will be approved so we can move forward with this next step of the Journey! 

Until next week please continue to PRAY FOR JORDAN!

8/9 Eye Surgery Update.....

Yesterday was Jordan's second eye surgery. What we thought was going to be a short smooth day turned out to be a LONG day:(   The actual surgery to weaken the muscle took only about 1 hour. Dr. Bradley said the surgery went well but for the first time Jordan woke up from the anesthesia shaking.  I must say with more surgery's in the future this does make me worry more!  The second step of this surgery was Dr. Bradly manually adjusting the muscle and tying the sutures.  This is where the 4 hour wait came in! Jordan had to be nice and awake for this so she could answer questions and move her eyes as directed by Dr. Bradley. Yes, she was wide awake for this with only numbing drops in the eye!  Let's just say as usual, Jordan was the perfect patient, with that constant smile on her face & of course, "no I am OK, there is no pain"! Taylor and I actually got to watch this and I must say it was pretty interesting!

The goal here was to 1. Straighten the eye again 2. help with the double vision.  After about 15-20 min of adjustments the sutures were tied. The muscle was moved to the maximum that is allowed. The eye does look straighter but it wasn't the great result that Dr. Bradley or we were hoping for.  Now we hope that the the muscles that were moved in the first surgery realize that this muscle from the second surgery has been weakened so they will pull the eye straighter. Now, don't get me wrong there is still a dramatic improvement to her eye so we are happy even with this result & we are still thankful. So for the next 2 weeks her eye will be bloodshot and she has to have ointment in her eye 3xday for the next 7 days. So overall, today went well & Jordan did great.
 We will see Dr. Bradley on Tuesday for follow up to make sure the eye is doing well & Jordan is hoping to get the glasses prescription that day also.  

I also want to apologize for not getting the blog updated yesterday! Thank you for your continued thoughts & prayers for Jordan and our family!  PRAY FOR JORDAN!!

Boston & Dr. Hadlock appt

This trip to Boston had been amazing! We meet with Dr. Headlock this morning and we are a little overwhelmed by all of the information that was received in such a short time span!

There are two surgical options available to Jordan. The first one is a two step process. This first step involves moving a nerve from the "good" side if her face to the "bad" side and letting that nerve regenerate for 6-9 months.  The second step then moves a muscle from her thigh and possibly a tongue nerve. After the second step the goal would be for the face to be asymmetrical and she would have a beautiful smile again!

The second option is to do a one step procedure that moves the tongue nerve/thigh muscle but the final result is not as dramatic as the 2 step.  

The plan is to digest this information, wait for her plan to be mailed to us, and then to make a decision. 

Please continue to keep Jordan and our family in your thoughts & prayers! We are off to enjoy some of Boston before our flight home.

 PRAY FOR JORDAN!

Therapy is going great...

Jordan just finished her second week of therapy & she is loving the challenges that come with it!  She is seeing what she needs to focus on to make her body stronger & is faithfully doing her exercises! We also visited the director of the radiology program at MSU last week and he reassured her that she will be able to do the program & also commented on her wonderful grades:-) Yes, it was a very proud Mom moment! The  visit was also very reassuring to us both & for Jordan it was nice to hear someone else say, YES YOU CAN DO IT! So now she is super excited about starting school in 3 weeks! 

We also visited the Honors house, picked up books, & of course ate at Pasquale's! I must say I ❤ Morehead & MSU!

This week we travel to Boston!!! We are so excited and Friday can not get here soon enough!! Looking forward to the next path on this journey!

Thank you for your continued thoughts, prayers, & support! PRAY FOR JORDAN!

Eye & other updates....

Today Jordan saw Dr. Bradley for a follow up on the eye. Overall the vision is better and it is where it needs to be for the Radiology program:-) yeah!!  Dr. Bradley wants the vision better and Jordan told her that little goals were big to her!  Unfortunately the eye has pulled back in(towards her nose) since surgery which is causing her to have some stigmatism. The eye position still looks better than before surgery but not where it could be. So after some discussion it was decided that Jordan will go ahead with another eye surgery to move the muscle that is pulling the eye in. Dr. Bradley is confident that this should get us back to the result we saw immediately after the first eye surgery.  We are hoping that the surgery will be before Jordan heads back to MSU in mid August! 

On another note Jordan started some outpatient physical & occupational therapy today! This is to help her with strength, balance, & fine motor skills! They also have a driver rehab program that I am going to inquire about for her. Her goal was to drive back to school in the fall but looks like that might be moved to Spring:( We still need to sell her Daisy and get her a automatic to drive!  

So we have a busy month ahead of us with weekly therapy, another surgery, & we can't forget the trip to Boston! 

Thank you for your continued support & prayers! PRAY FOR JORDAN!

We are going to Boston!!!

I am excited to share with everyone that Jordan will see Dr. Tessa Hadlock August 2nd!!!  Jordan has been all over her website and will have a long list of questions ready come appointment time!!

Again we want to thank everyone that keeps Jordan & our family in their thoughts & prayers! All things are possible with God:-) 

PRAY FOR JORDAN

Eye UPDATE & GREAT NEWS :)

Today marks 2 weeks since surgery & after a rough start it looks great! Jordan had a f/u appt with Dr. Bradley 6/25 and she seemed to be very pleased with the eye.  Jordan has a little more "blurry" vision that what she was hoping for but she seems to think that it will correct itself in the weeks to come. The redness also looks much better :)   So for now we are just putting no tears in as needed & will see Dr. Bradley back the 2nd week of July.  
One big step did happen this past week!  Jordan drove a little for the first time since last year!  She was very excited about driving but was/is still very nervous about it! So hopefully we can get her "Daisy" sold and get her an automatic car to start getting used to driving again.
Now while  I was on the phone typing this I received word that Jordan WAS approved to go for evaluation with Dr. Tessa Hadlock @ the Massachusetts Eye & Ear Clinic! This news is so exciting for Jordan & I can NOT stop crying tears of joy @ the moment! Looks like we have a trip to Boston to plan!!! Anyone have some frequent flyer miles they want to give us?  LOL  
Thanks to all of you out there that keep Jordan & our family in your thoughts/prayers on a daily basis!  God is listening & God does provide!!! .....PRAY FOR JORDAN :)

Looking good!

Been a rough week but today she turned a corner!! 

Frustrated!

Well yesterday we were back to see the the MD for some nasty swelling that happened 2 days post op with some drainage. MD said no infection just that her eye was very angry because it was drying out at night because the eye doesn't close all the way. So we were told to tape at night & do no tears every two hours on top of the every 6hour antibiotic ointment. We were very happy there was NO infection! 

Today we are concerned with an area on the outside corner of her eye that seems to look like a bubble or blister protruding from her eye. 

Just talked to MD and she states that Jordan is just having more swelling than she expected and thinks it should resolve in a week.  Why can't anything be EASY?!?! 

Jordan is worried so please say a little extra prayer for her tonight!

Eye Surgery Update 6/14/13

One more part of Jordan's Journey started today and I can sum it up in one word....GREAT!!!  Of course the trip there was a little rushed because they called us to come in 1hr early. So coordinating Jordan's posse that goes to all surgery's was CRAZY!  LOL  The surgery today moved 2 eye muscles to the side to help pull Jordan's left eye to be straight. She also has a permanent stitch in those muscles to help pull them tighter to hold that eye straight. Dr. Bradley chose not to do the Botox injection due possibly causing "too much" of a correction this time that could not be corrected later on.  The procedure only took 1 1/2 hours & Jordan did wonderful! She will have some bloody drainage for the next few days and will have lots of irritation from the 8 stitches in her eye...OUCH!  Dr. Bradley was very pleased with the immediate results and said in 2 wks we would have a good idea of what today's result one be and that changes could continue for 3 months.  So, if a second surgery is needed it would not occur until September or later. Below I have posted a picture of before & after today's surgery.  The pictures show what a great success today was & I am sorry if the after picture makes anyone squeamish.  

Overall today was a complete success & we have the man upstairs to thank for that!  We have been blessed with wonderful doctor's and I can't thank them enough for all they have done for Jordan!  Thanks for all the support & prayers for Jordan & our family.........PRAY FOR JORDAN

Before Surgery

After Surgery

MD UPDATES

Lets start with a update from Dr. Patel (face).  Dr. Patel called me last week regarding Jordan & a possible new plan for her.  After much thought & discussion with colleague's he would like to send Jordan to Boston to see Dr. Tessa Hadlock, http://www.facialnervecenter.org/team_physicians.html, a specialist there that only deals with facial paralysis.  He explained that he does not perform the surgery that she has to offer & his thoughts are that it will give her a better long term result that what he has to offer. I have read about Dr. Hadlock & searched the above link and her results are amazing!  Words can't express how impressed I am by Dr. Patel & his compassion with Jordan.  The catch here is we have to get insurance approval.   So, prayer warriors, I need you to pray that this will be approved so we can go see what this lady has to offer!
This past Friday (6/7) Jordan saw Dr. Timoney, he is the MD that will do the surgery to help her left eye close. We let him know about Jordan's upcoming surgery on 6/14 and after getting that knowledge the plan really changed!   Dr. Timoney said that he wants to wait a couple of months before he does anything to the eye lid so that Jordan can completely heal from the eye surgery.  He explained to us that this time was needed so that the surgery that he performs will not affect the surgery that Dr. Bradley does.  He also explained what he may do for his surgery but that he can't be 100% which option he would choose until we know the results of the upcoming surgery. He also is still concerned she may have a thyroid issue even though her labs are normal.  He is going to discuss this with some colleague's and get back to us.  So, as Jordan would say, "I don't do anything easy"!
 This is not the news Jordan or we were hoping for, since she wanted to get most of this out of the way this summer before school starts back in the fall. The reality is this journey will be lifelong for Jordan & our family.So as we wait to see if Boston gets approved we are gearing up for surgery this Friday(6/14). Jordan is grateful it is an outpatient procedure but is not looking forward to the fact she can not swim for at least 2 weeks:(
As always thank you for the continued prayers & support.........PRAY FOR JORDAN

One Year on 5/25/13......

Looking back on this past year the first thought I have is THANKFUL!  Thankful that God let Jordan continue  her journey here on earth! Thankful to ALL the health care workers that have touched her life along this journey! Along the way many have become cherished friends and as a Mom I want to say thanks again for all you did for Jordan & our family! Thankful for all the friends, family, & unknown people out there that have supported us in MANY ways this past year. Thankful Jordan was able to return to MSU this past semester & thankful for ALL the MSU honor's faculty & staff at MSU who made that transitions easy for her. Thankful that she has come as far as she has come during this difficult journey that she continues to walk. While there is still a lot of unknowns out there, we know that Jordan has the strength & courage to overcome anything!  So tomorrow we will enjoy the day & be thankful for the little things in life.  PRAY FOR JORDAN!