Thursday, August 23, 2012

ENT visit today & f/u with vision therapist

Today Jordan saw ENT, DR. PATEL for the first time regarding the palsy on the left side of her face.  I must say we liked him from the minute he walked in the door!  How many MD's have you seen that introduce themselves and then apologize for what you have been dealt at such a young age?  I was VERY impressed with his compassion & bedside manner!  He discussed in length with us that he wanted to wait at least a year from the date of surgery before any surgery was discussed for the facial nerve.  I showed him pictures prior to surgery & a week after surgery to show him the great improvement that has already occurred! He said that we could do some nerve test but that the outcome of the test would not change the way he treated her & Jordan decided she did not want any more test done @ this time.  He was perfectly fine with that!  His main concern today was that her left eye still doesn't close.  So, we will be adding a 5th MD to the team to see about having a minor procedure done to get the eye to close.  He said that if Jordan did not have this done that there would be long term damage that could not be corrected & he did not want to see that happen.

After that visit we headed to Versailles to see Mary Ellen, the vision therapist.  We discussed in great detail the results from the evaluation the week before & she explained in length how vision therapy would HELP her left eye!  So, Jordan will start vision therapy next Wednesday.  This will last about 30 weeks @ a total cost of $4100!  I am in the process of appealing the insurance denial for this much needed service & hoping that SSI will also be approved.  If neither of these things go in our favor, I have faith that God will provide a way to provide Jordan the care that she needs. 

It is hard to believe that this Saturday will be 3 months since Jordan's surgery.  While there have been setbacks, there has also been progress. Jordan continues to have a long road ahead of her but that positive attitude of hers, family support, & prayers will carry her down the road ahead! 
                                                       PRAY FOR JORDAN!!!

Tuesday, August 21, 2012

Life goes on...

Well this past weekend was very busy for us!  We spent most of Saturday walking around @ the Woodland Art fair!  We did take the wheelchair in case Jordan wore herself out and I am happy to report she only rested a couple of times! She was determined to walk and she did it!  GO JORDAN!  Sunday we went to Special Olympics bowling so Jordan could visit with the athletes.  Both of the girls have been a unified partner for bowling/track since they were in the 5th grade! I don't know who was more excited, Jordan or the SOKY athletes! Jordan loved seeing everyone & not being treated any different than before surgery.It was good seeing everyone & I know that her partner will be glad to have her back next year bowling!  This year Jordan has decided to just help out in other ways & the SOKY family is glad that she can still be involved in some capacity!

 Jordan should have started back to classes yesterday as any other normal 19year old.  Instead we had yet another MD appt, this time for Medicaid.  Yes, we have applied for assistance since the medical bills just keep coming! That is what it is there for, people who have a REAL NEED for help. I pray that this will go in our favor! To be honest as a health care worker the exam was a complete joke but had to be done because of the people that ABUSE the system.  I will NOT get on that soapbox!  Instead of books this Fall Jordan will keep focused on rehab and pushing herself  so she can hopefully get back to MSU come January.  I will continue to be her cheerleader telling her every step of the way that she can do it!  Jordan's continues to amaze me everyday with her outlook on life!  Adversity is a daily thing for her but she doesn't let it get the best of her!

Taylor starts classes tomorrow & has auditions today for the percussion studio! I am so proud of the young woman she has become! Living in her 1st appt & her 1st real job with music @ GRC! Where did the time go??? Trevor is a Freshmen @ MCHS & football is keeping him & us busy! We are excited about football season and excited to see him wear #67 which was D's number in high school. Darian is a Senior this year and for all of you that are reading this that have had Seniors before know that her year will go by way too FAST!

This summer has put life in perspective for our family and I am very thankful for all that God has blessed me with and continues to bless me with.  For those of you that are reading the blog, "live one day at a time because we are NOT promised tomorrow"! As always our family thanks you for all the thoughts/prayers!  PRAY FOR JORDAN

Sunday, August 12, 2012

New complication :(

Friday was the first office follow up with Neurosurgery since Jordan's surgery in May.  While Dr. Fraser said Jordan was his superstar and doing great overall, unfortunately there is a new issue :(  Jordan has developed a post surgical Pseduomeningocele over her sub occipital area.  This basically means that there is fluid built up under her skin/muscle at the back of her head.  He said that this could be the cause of her daily morning nausea.  So the plan for now is to just watch it because he (we) does not want to have to do another surgery if it can be avoided. He gave her some things he wants her to try to see if they help with the nausea & I am to follow up with him next week to let him know if they are working or not.  He also is going to send us to a Dr. Patel (ENT) to consult with him about reconstructing the nerve on the left side of her face. He said that he wanted her to feel comfortable in her body! I can't say enough great things about Dr. Fraser, Lindsey, & that resident team! They are AWESOME!  So overall Jordan has done great since her May surgery but overall wasn't the news we were hoping for.  As a Mom I just want her to catch a break! 
I know that God has a plan but I wished he would make this journey a little easier on her! 
Please continue to PRAY FOR JORDAN & for our family!

Tuesday, August 7, 2012

Update :)

Jordan has finished her 1st week of CLIMB and let me tell you she is LOVING it!!  I am so happy that we pushed to get her into this program & was able to get started right away!  The therapist are awesome, she loves the outings, & the interaction with the other patients!

Today was a very bittersweet day for me as a Mom.  As most of you that are keeping up with the blog know Jordan has an identical twin sister Taylor.  Today Taylor moved into her 1st off campus apt with 3 roommates to get ready to start her Sophomore year of college @ UK.  It was great getting her moved in, getting her settled, & getting to know the one roommate that I didn't know!  Emotionally I just wanted to cry all damn day!  It was so hard to move her, knowing that for once in her life she will be starting something without Jordan doing the same thing!  For 19 years they have always done things together & today I felt for both of them. This has been a real test of every one's strength & let me tell you they are MY strength!  Jordan has officially decided to sit out a semester and will return to MSU in the Spring. This was a very difficult choice for her but she realizes that this Fall her focus needs to be on rehab.

Now for some good news!  We got to see Dr. Graebe earlier than expected & we loved him!!!  We were there for about 4 hours & we were overloaded with information!  The good news is he thinks that there is hope for the left eye to get corrected! He was very honest and said that the vision therapy may not help 100% and that surgery may still have to occur at the end but that she did not need surgery @ this time. So next week she will have some additional testing done to see how the nerve impulses that control the eye are working & get a complete evaluation by the vision therapist.  After all that is done we will meet with him & the vision therapist to get their recommendation. This was very positive news to us and we can't wait to get started. The downside to this is insurance does not cover any of the expense. I am going to write a nice appeal letter to our carrier & I am seriously thinking about advocating for vision therapy to be covered by ALL insurance carriers!  I must say that I was a very shocked at the expense but as all you parent's know, we will find a way to make it happen.  I have faith that God will provide. 

Thanks for all the prayers & please continue to PRAY for JORDAN!