Sunday, December 22, 2013

Starting to feel better & Merry Christmas from all of us...

After a very long day on Friday that included a 2 hour flight delay, we made it home safely about 1:30 Saturday am.  After waking up, Jordan got to take her first shower since surgery, and it made her feel so much better!!  The face swelling was pretty bad on Friday and Saturday, but today it is looking much better and her leg discomfort is much better!  Today she says she has some numbness on the right side of her face and above her lip so I am going to email tomorrow to make sure that is normal. Overall, we are very pleased with the procedure. Now she just waits for the nerve to regenerate itself which happens about a mm a day.  The goal is in about 3-4 months she will feel some tingling. Below are some pictures of her facial incisions & fun in Boston.

Christmas is almost here!! As most of you know, Christmas is also the girls birthday and this year they will be 21!! So Christmas is always a very special time for us.
                                            Right side of face           Left side of face
                                            Jordan & Taylor & Jordan with the Christmas Tree in Faneuil Hall.

We want to wish all of you a very Merry Christmas and a wonderful New Year!!



Thursday, December 19, 2013

Boston...1st day post op

After a rough night of nausea, vomiting, and changing ice packs every hour she is doing well. We busted out of the hospital this afternoon, got to the hotel and took a good long nap! Her biggest complaint continues to be the swelling and the left leg discomfort. As all of you know that is her good leg so walking is a little rough.  She is on some antibiotics for the next 7 days and she has some good pain meds for the ride home. Jordan's positive attitude and perserverance continues to amaze me!
I want to also give a shout out to the wonderful staff of Mass Eye and Ear. They were wonderful!!!

Wednesday, December 18, 2013

Boston surgery..

 Today Jordan had the 1st of 2 surgeries  on her face to help her facial palsy. During the surgery a nerve from her left leg was connected to a nerve from the RIGHT side of her face and then threaded into the left side of her face. 3 hours and 5 incisions later she is doing great! The largest incision is on the right side of her face, one on the left side of her face, one on the inside of the upper lip, and 2 on the lower part of her left leg.
The only real complaint she has is the face dressing and her lip swelling! Unfortunately, the dressing has to be worn for the next 3-4 days and the swelling will get worse before it gets better:(
On another note if you ever travel to Boston ALWAYS ask the cab driver if he knows where he is going!!!  This morning the cab we took wanted us to tell him how to get to where we were going!! For those of you who know me personally, well ya know how that went!
I want to thank all of you for your thoughts and prayers!

Tuesday, December 17, 2013

Back on the road, 4.0 for the semester, & in Boston!!

Look out everyone because Jordan is back to driving!! Yesterday her car was fitted with the attachment to put the gas pedal on the left side of the brake to make driving easier for her.  I can't even begin to explain  how happy she is to have her independence back! While I am excited for her, I hope my nerves survive!! Let's just say it is worse than when she was 16!!
Today also brought the news of Fall semester grades...4.0!  All I can say is how proud I am of her and all of her accomplishments!! She is AMAZING! 
We arrived in Boston this morning to see the eye MD and to prepare for surgery tomorrow. The eye MD was very informativeand very overwhelming!!  Basically Jordan has 2 options she can choose from another surgery  or nothing.  He explained in great detail the pros and cons of each option. Jordan said she was going to discuss all of this with Dr. Bradley before she makes a final decision.  
Once that decision gets made I will pass that onto all of you!! 
On another note, it is VERY cold & snowy here!!! This Mom is not made  for cold weather!!
I want to thank everyone that continues to help & pray for Jordan & our family during this journey.

Monday, November 18, 2013

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!

Thursday, October 31, 2013

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!  

Wednesday, October 16, 2013

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

Wednesday, October 9, 2013

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!!

Thursday, September 26, 2013

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!

Monday, September 16, 2013

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!

Saturday, August 24, 2013

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!

Saturday, August 17, 2013

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!

Saturday, August 10, 2013

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!!

Friday, August 2, 2013

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.

Sunday, July 28, 2013

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!

Tuesday, July 16, 2013

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!

Monday, July 8, 2013

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:-) 

Friday, June 28, 2013


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 :)

Friday, June 21, 2013

Monday, June 17, 2013


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!

Friday, June 14, 2013

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

Monday, June 10, 2013


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,, 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

Friday, May 24, 2013

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!

Tuesday, May 21, 2013

MD Update.....

Well today we meet with Dr. Patel & went over the surgical plan to help Jordan get her a new SMILE!I am going to try to explain this as best I can. This procedure is called a facial sling.  No she will not have to wear a face sling afterwards!  :)  This will basically use a piece of her muscle from above her ear and use some tissue from her left thigh to connect the muscle, this will be connected somewhere close to her lip and then afterwards the goals is for her to have a new smile :)  When he was explaining this Jordan was very intrigued  & finds this part of it very fascinating. While we were hoping that he and Dr. Bradley could coordinate this surgery after speaking with him looks like that will not be. So the first surgery will be with Dr. Bradley(eye) in June and then the second surgery will be in July with Dr. Pate(face/smile)l & hopefully Dr. Timmoney, who will fix the eye lid so her left eye can finally close.We see Dr. Timmoney on 6/7/13.  So overall we are looking at 3 in 2(hopefully) surgery's this summer.  As soon as I have all the dates I will pass them along to everyone via the blog.

We have been blessed with wonderful physicians/nurses/staff/caring loved ones/friends during this journey. Again I ask you to keep Jordan & all of us in your thoughts/prayers during the weeks ahead!  

Wednesday, May 15, 2013

End of Semester & MD update

Jordan came home last Friday and I am thrilled to have her & Taylor done with school for the summer! I am amazed once again that I get to pass along that Jordan pulled out a 4.0 this semester(Taylor also got a 4.o)!!!  Words can't express how proud I am of her for this achievement. This past year she has dealt with and overcame so many obstacles & always with a smile on her face! She has changed her major to imaging sciences(radiology stuff/MRI/CT/US) she will specialize but not sure in what yet. I know she will succeed and be wonderful in this field! While she has many obstacles still she is determined to not let ANYTHING keep her down!! I also want to give a HUGE shoutout to everyone at MSU for being so wonderful to Jordan this semester!  The support that she receives there helps her be successful & helps this Mom know that she is surrounded with caring/supportive/loving people.

Yesterday also began the summer MD appts!  Yesterday we saw Dr. Melanie Bradley to discuss the eye surgery.  After a long discussion it was decided that Jordan will have the surgery done. This will entail moving 2 muscles in the eye and the goal is to make her eye midline. Dr. Bradley was very honest that Jordan may need another surgery later on but we are very hopeful this surgery will have great results! Jordan is VERY excited about this surgery!  We are hoping to coordinate this surgery with Dr. Patel, who will do surgery on her face, so that she will only have to be put asleep one time!  We see him on Tuesday!  Fingers crossed that this can happen!

So looks like our Summer will again be filled with surgery's/MD appts but we are also hopeful she will get to enjoy the lake this summer!  Thanks for the continued prayers/support during this Journey that Jordan & our family continues on.

Friday, April 26, 2013

Almost the end of the semester....

I can't believe that Jordan is almost at the end of her Spring semester!  She is excited to have the semester over with but a little apprehensive about the upcoming surgery's. We will move her home 5/10 and the MD appt's begin 5/14. Seems like dejavu' of this time last year! Hope this summer is a little smoother for her & us! As a her Mom, I still can't believe it has been a year since the real journey began.  This week marks a year for the bleed and a year of NON driving for her.  She has made so much progress this past year but still has lots to make.  There isn't a day that goes by that I don't thank God for letting me keep her here!

So in the next couple of weeks the blog will be alive again with lots of updates & until then...PRAY FOR JORDAN :)

Thursday, April 4, 2013

Hello out there....:)

Whew can't believe my last post was in FEB!!  WOW  Crazy how fast the time is going this year!  Jordan seems to overall be doing well but the weight of this journey is starting to get to her mentally.  At this point she was hoping to have better fine motor skills, hoping to be driving, hoping her eye would be better, and was hoping the face droopiness would have gotten better.  Unfortunately, none of these things have happened.  For a 20 yr old young woman all of these things are hard to deal with! Here lately she has been very angry about everything and upset with God. I pray that God will show himself to her, show her he has been by her side the WHOLE TIME, and her faith is renewed again.
She just told me the other day that she just wants to feel "normal" again.  I tried to explain to her that NONE of us are even normal to begin with but she wants to look into the mirror and see the person she was before surgery. If I could only find that damn magic wand!!! Not only do her deficits affect her it has also affected what she wanted to do in her career path.  Like that decision isn't already hard enough for a young adult now she has these deficits that have to play a role in what she decides to do.  No wonder she feels like throwing in the towel some days! GOD HAS A PLAN for her, I just need him to SHOW it too her!!
I am sure the next couple of months I will be updating even more since we have lots of MD appointments in the future and Jordan will be finishing up the Spring semester(she is hoping to keep that 4.0). We thank you for all the continued prayers & support for Jordan & our family.            PRAY FOR JORDAN!!!!

Monday, March 18, 2013

Life with a CA :(

For people that live with a CA & the family members of someone with a CA, life is changed FOREVER.  The below is a great explanation from his point of view of living with a CA.  Somedays you just can't be positive:( 
  • “Doctor!”.....”Doctor!!”

    “I’ve got this stabbing pain in my side, its numb and tingly. What is wrong with me?” After some tests the specialists that have seen you diagnose you with having a knife sticking out of your body. It has missed the spleen, but is slightly inside your heart. They tell you that the condition is rare, and that surgical removal of the knife is too dangerous and the risks of more permanent damage are high if they attempt to remove it. They tell you they will monitor it and just to “wait and see”. There is no medication and there is nothing that they can do. They tell you to just continue with your life forget about the knife and pretend there is nothing wrong.

    After hearing that: Would you not wonder what is wrong with your specialists? How can you forget about it and just pretend nothing is wrong?

    Do you agree that your life would have altered dramatically because of this knife? Would you not feel anxious, stressed and depressed with this kind of news and treatment option?

    It seems that when a doctor and/or specialist does not have any real treatment option for you; in fact they really don’t know how to deal with you, that you somehow should just move on and pretend nothing is wrong. I wonder….. How should a doctor respond to such a situation?

    Should health care not respond more to the emotional needs that arise from such diagnoses? Everyone seems to be so concerned with mental health these days, yet when a serious patient has no treatment options – a major cause for future mental health issues – they tell you to just go away and pretend nothing is wrong! BUT … something is wrong – YOU HAVE A KNIFE STICKING OUT OF YOUR BODY!!

    Off course you all know that I don’t have a knife sticking out of my body. This was an analogy for the vascular tumours in my head known as Cavernous Angiomas. There are no medications and no treatment other than surgical removal. Here in Canada they have not offered me any kind of treatment. They have told me that it is all in my head. I look fine on the outside so I should be okay, and should move on with my life. They don’t even believe me anymore when I say that my cavernous angiomas are causing me much pain and discomfort. They have the nerve to tell me that these vascular tumours don’t cause headaches?

    Even the physical evidence that I have in the form of MRI films that show recent bleeding from my right occipital lobe lesion is ignored here by the radiologists. Their report says no new bleeds and no new lesions, while a top specialist in the US indicates a recent hemorrhage. They feel the bleeding lesion is asymptomatic. Do you think when a cut in your arm is bleeding, it is asymptomatic? Is bleeding not a symptom? Does it not indicate that there is damage to a blood vessel underneath the skin? Why then would they say that a bleeding cavernous angioma is asymptomatic?

    I feel alone….very alone!!

    I feel I am fighting an uphill battle against an established medical field that is too short sighted and dismisses a patient when there is no treatment. Is it my fault that they have not been able to figure out how to treat me properly?

    Is it my fault I have a rare disease?

    If I had cancer, they would offer surgery, chemotherapy and radiation treatments in the hope to cure me. They would even offer psychiatric support to deal with the diagnosis.

    Did I ever get any of that? NO I didn’t…and why not? My family has additional stresses, because they know that what I suffer from, is something that I could have passed on to my children. Each of my 4 kids has a 50% chance to have inherited this disease.

    Is there no psychiatric support available to help me and my family cope with that?
    Why do I have to fight so much?

    I am sick and tired, and I am so sick and tired of being sick and tired. I wish the medical field…”health care” became more caring.

    I know this is a bit depressing to read, but I need your help in figuring out on how to make the health care professionals understand this issue better and how we can help to improve their standards of care.

    I hope you can come with some brilliant ideas and perhaps I will feel less alone. Thank you.

    Henk van der Wilt
    Please share with all your friends on Facebook and Twitter.

Saturday, February 16, 2013

Went back to the MD.....

Our day of MD appointments started @ 9am yesterday and ended about 3:(   That made for a long day for the both of us!  First Jordan saw Dr. Timoney(one of her 3 eye MD's) and he said her left eye was doing wonderful still!  He was very happy to report that even though the eye still does not close it isn't showing any signs of irritation, YEAH!  One thing he did was order some labs on her to check her thyroid function due to her eyes "bulging".  He has to rule this out before he lifts up the lower eyelid. So it looks like in May/June Jordan will be having some eye surgery on the muscle and eye lid.   We will also see Dr. Patel in May to discuss the surgery option on the face muscles. The 2nd stop of the day was for a MRI. Unfortunately they were running behind so we had a lengthy wait here :(  After the MRI the next stop was to see Dr. Fraser.  All in all her report was good except she does have some swelling in her medulla.  At this time he just want to watch it unless she becomes symptomatic & he said he really can't explain why there is swelling.  Not what we were hoping to hear but we are still very blessed.   She had several questions for him, one being roller coasters! He said he didn't want her to be restricted from anything in life but to not go for the biggest one!  So after 8 years I see a King's Island trip in our future! He again remarked how positive Jordan's attitude has been during all of this and how hard he knows it has been on her in every way.  Of course in typical Jordan fashion she was like, "it is what it is." So in August Jordan will have another MRI & see Dr. Fraser and I am sure we will have roller coaster stories to tell him!There is no way for me to really ever thank Dr. Fraser & his wonderful team enough for the care they have given Jordan & our family.

On another note Jordan is adjusting to school wonderfully!  Her roommates are wonderful with helping her (if/when) she needs it and she has gotten into a "normal" routine.  Now she is looking toward the future and trying to decided what she is going to major in, Nursing/Imaging sciences. I am hoping that God will help direct her in where/what she needs to do. 

Again, thanks to ALL of you that continue to pray for Jordan & our family! It does take a village to raise a child and Jordan has a HUGE village :)  Love to all & PRAY FOR JORDAN!

Tuesday, January 15, 2013

Back @ MSU & MD update :)

Only Jordan could move back to college with caravan!  Moving her back to Morehead was a group adventure with Taylor, Sara, Cory, Trev, & of course Mom & D! As a Mom my emotions have been on a roller coaster since dropping her off on Saturday. This was a huge step for Jordan to take & I am so very proud of all the progress she has made these past 8 months to be able to start this next chapter of her Journey.  The smile on her face was priceless when we arrived on campus Saturday! Jordan was glad Mornissa(Jordan's roommate last year) & her family were there moving back @ the same time so we enjoyed seeing them & catching up.  After getting settled & visiting with friends we were off to Pasquales for those famous cheese fries!  Jordan has craved those fries since May& they are very tasty!  After that it was time for all of us to say their goodbyes and let me just tell you, taking your child back to college the 2nd time & after all we have been through, is/was NOT easy!  Jordan said the first day of classes was GREAT & that all of her professors were very nice!  Her strength continues to amaze me!

On another note Jordan continues to do her weekly vision therapy which is helping her vision! She also just had a follow up with one of her eye MD's and she was very honest with us that to pull the eye out mid line that surgery will more than likely have to happen in the spring. We continue to pray that this will correct itself & we will make the decision at the next follow up regarding whether to do surgery or not.  Jordan will also have a MRI/Dr. Fraser follow up a month from today!  We are hoping for GREAT news at this visit :-)

Please continue to keep her in your prayers & again we thank each one of you that has helped Jordan on this Journey.  PRAY FOR JORDAN :)