Friday, December 21, 2012

Merry Christmas

I can't believe it is Christmas already!!  This Christmas is going to be a little extra special around our house! The 25th is not only Christmas & Jesus birthday,  it will be the 7 month anniversary of Jordan's surgery, & the girls 20th birthday!  :):)  Our family is so blessed this Christmas & we are so thankful to God for all of his blessings! 
To each of you that have supported us along this journey with monetary donations, prayer, meals, or just being supportive friends, our family thanks you.  We could not have traveled down this journey without all of you!  Our family wishes you & yours a very Merry Christmas!

                                                 Trevor, Taylor, Jordan, & Darian

Tuesday, December 4, 2012

Thankful for all the support!!

Last night was the last of several successful fundraisers that have been put together by friends/family for Jordan.  Our family can not thank each and everyone of you enough for your donation, thoughts, & prayers during this Journey. The funds that have been raised have gone to vision therapy & Occupational therapy.  These 2 therapy's are going great & Jordan is giving 110% to rehab herself back to where she was & brings her closer to her main goal of getting back on that MSU campus come January!!  With your help she has been able to continue therapy, is showing great improvement, & has scheduled her classes to return to school come January!   I am so proud of her but I must say  taking her back to school & leaving her is NOT going to be easy for this Mom!

There has also been lots of interest in the tshirts designed by the girls friend, Luke Francis! The design is below & if you are interested in buying a shirt please contact me & if there is enough interest we will place another order! The cost will be $15 a piece and all proceeds will go towards therapy.
 Again thank you for your continued support/prayers for Jordan & our family! PRAY FOR JORDAN!

Monday, November 26, 2012

6 months!

This past weekend we enjoyed our Thanksgiving with family & friends. This year was  extra special for our family & we enjoyed/cherished spending time with our loved ones this past weekend! Yesterday marked the 6 months mark since Jordan's surgery!  WOW  Where has the time gone?  Jordan has made amazing strides & continues to work hard everyday on her recovery! She is one amazing young lady & I am so thankful for her! So to all of our friends who keep up with the blog..we hope you take the time to enjoy your family this year, because life can change with the blink of an eye.

Thursday, November 8, 2012


WOW can't believe it has been 3 weeks since I updated :(  Sorry about that for those that follow!  So lets get started!!!

Since I last updated there have been 2 more fundraisers for Jordan!!  One was @ the Chevy Chase location of Puccini's and it was wonderful!! Valerie & Dee did a great job and the turnout was AMAZING!  I can't believe how many teachers, coworkers, friends, & family came out to show their support!  We are so very thankful to each & everyone of you and I enjoyed catching up with everyone!!  The 2nd fundraiser was at Canewood golf course. What I thought was going to be one cold & nasty day turned out to be good nice fall day & the Chili was amazing! The Chapman brothers & their wives did a AWESOME job getting this scramble together & it was great seeing some of the North side crew that I hadn't seen in awhile! The North side is very special to me & my girls :)  I want to thank everyone who golfed & for coming out to show your support to Jordan & our family!  All the fundraising money has gone towards vision therapy & occupational therapy!  Our family thanks EVERYONE who has helped Jordan on this journey!  There is one more fundraiser coming up!!  December 3rd, 2012 from 6-9 @ BD Mongolian Grill in Hamburg!  We need guest griller's so if you are interested please CONTACT ME!!!  :):) 

Jordan started doing some independent pool therapy @ Cardinal Hill this week!  She loves the water & is hoping to do a 3 x wk regimen along with her weekly OT & Vision therapy!  She has a daily home therapy regimen that she does religously & her goal is to get back on the MSU campus!! Now for the BIG news :)  Jordan did register for Spring classes!!!  :) ) The plan is come January she will be back on campus!!!  As a Mom I have mixed emotions about it but I know she can do ANYTHING she puts her mind too!!!  Jordan is ready to have some normalcy back in her life & I think being back on campus will be good for her! As she reminds me daily, I can't keep her under my wing for ever!

Again thanks to everyone for your thoughts/prayers/donations!  PRAY FOR JORDAN!! 

Sunday, October 21, 2012


2 years ago the girls where trying to decide which school to attend.  There were endless college visits/interviews etc.  The final decision for them both came down to either UK or MSU.  After many discussions,tears, & sleepless nights they both made their decisions.  Jordan chose MSU & Taylor chose UK.  The decision for them to separate was very hard on the girls & me!  I must say each of the girls made the right decision!!
Jordan's experience @ MSU has been wonderful! From the minute that she stepped on campus as a college Freshmen she became involved with things around campus!  As most of you know Jordan was preparing for finals when this phase of the angioma journey began. I didn't realize, nor was I expecting the huge support for Jordan & our family from MSU!
This past Friday night the MSU Honors Program held a fundraiser for Jordan. I was so touched by the turnout of faculty, students, & support from the Morehead community!  They had a silent auction of some great items, great music, & the chili was wonderful!! It was so good for Jordan to see all of her MSU friends & for them to see her! I was touched by how many students were there that didn't know Jordan but stopped to introduce themselves to her & tell her they were rooting for her!  I also want to thank Dr. Krummrich for inviting Ms. Kentucky Wheelchair 2012, Heidi McKenzie!  Heidi is a wonderful inspiration & Jordan really enjoyed talking with her! 
I can' thank Dr. Krummrich, Brenda, Vandy, & the honor's students enough for all the love & support shown to Jordan & our family these past 6 months.  Jordan can't wait to get back on campus & as a Mom I will feel a little better knowing she has all of you there for support!
If you are reading this & your son/daughter is starting to make college visits, I encourage you to go check out MSU!  MSU isn't just a school, they become family!  GO EAGLES!!!

Friday, September 28, 2012

Obstacles everywhere!

Well the insurance obstacles continue :(  Why is it that we have to fight for help that our loved ones need?  Why is it that someone @ a desk gets to determine how many therapy visits you get a year regardless of WHY you need the visits?  The therapy visits that the insurance ALLOWS is getting ready to run out for the year for Jordan.  My plan only allows 45 visits a year & my plan goes from July1st-July1st.  So no more visits until JULY:(:(  To me this is UNACCEPTABLE and WRONG!  The application for SSi was denied(they say she is able to work) so we are going to start that appeal process.  We are also going to apply for a Brain injury medicaid waiver program.  Hopefully, this will have a positive outcome for her! I keep telling myself that God will provide!

There are 2 upcoming fundraiser for Jordan :)  The first one will be on October 19th from 5-7 @ the Morehead State University Honors house. This is a NON MSU sponsored event hosted by some wonderful MSU folks!  There will be entertainment, refreshments, & a silent auction. Jordan's MSU family has been wonderful to her & our family during this difficult journey.  I would like to especially thank Dr. Philip Krummrich.   The second fundraiser is on October the 23rd @ Puccini's in Chevy Chase.  This event will be hosted by Valerie Esposito & the wonderful owners of Puccini's.  This is an ALL DAY event!! We will be there from 5ish-8.  So, if you are in the area that day please come by and enjoy some great food with us!!

Jordan continues to do well & works hard at therapy! The therapist are wonderful and she enjoys the interaction with the other patients!  She has also been helping paint @ the house!  Which has wore her out but she has hung in there!  Vision therapy is also going well and we hope to continue to see progress with her left eye. We thank you for the continued prayers and support for Jordan & our family.  PRAY FOR JORDAN!

Thursday, September 13, 2012

Overdue update!

I can't believe that it has almost been a month since I have updated the blog :(  I am so sorry!  Well it has a been busy so let me get to things!

We have seen 2 other eye MD's since the last update. Dr. Bradley & Dr. Timmoney. I must say we fell in love with these two right from the beginning also!  I can't say we love the wait to see them but it is worth it!  LOL  Dr. Bradley would be the MD operating on the actual eye muscle if we need to do that in the future.  Dr. Timmoney would be the MD operating on the eye to help it close properly.  Both were please with her eye health and are going to just follow her for now. YEAH!  Jordan does have to use eye drops frequently and she has to patch her left eye at night to protect it.  Not bad news from either of them & Jordan was just glad that there is NO surgery for now!
Therapy seems to be going well and Jordan loves the CLIMB program.  I think it helps her in so many ways and she looks forward to going!  Vision therapy has begun and she is diligently doing her eye exercises every day!  I must say that it has only been 3 weeks but I can already see some improvement when I help her do her eye stretches! YEAH!  Her resilience and strength continue to amaze me! 
The worst thing that has happened since my last post was the death of Jordan's 17yr old cat Oliver :(  This was her baby and was a huge loss after all that she has been through.
As always we thank you for the thoughts/prayers for Jordan & our family!  PRAY FOR JORDAN!

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!

Tuesday, July 31, 2012

Started CLIMB today :)

Jordan finally started the CLIMB program @ Cardinal Hill today!  CLIMB is a rehab program @ CH that helps people get back into school/work force successfully!  This will be 3 days a week from 8-3 and she will get physical, occupational, & speech therapy on those days.  They also do outings so the patient is in a "real"life setting.  This helps the therapist & the patient see what really needs to be focused on.  Jordan is VERY excited and had a great first day today!  This morning for me it was like taking her to school for the first day with her lunch box in tow! I must say taking her to her first day of school was much easier than leaving her today by herself!  At least her first day of school Taylor was with her!
Yesterday we saw the Neuro Opthamologist and it didn't go as well as we expected.  Let's just say that we can't wait to see the behavioral opthamologist in late August! As I have mentioned before Jordan is still battling the nausea on a daily basis:(  So, she is getting ready to have a ultrasound to check out her gallbladder & if that is OK, we will add a gasto MD to the mix of physician's we see!  Poor kid just can't seem to catch a break :(
As a Mom right now it is so hard for me.  Taylor, Cory (Jordan's boyfriend), & all of her friends are getting ready to head back to college and Jordan still hasn't made the decision to go or to sit out a semester.  Mentally there isn't a question! Physically I just don't think it is safe for her.  Does she know all of that, yes! Does it make it easier for her?  HELL NO!  This is one of those rare times that she is pissed off about her medical issues.  Can you blame her? NO  Does it break my heart?  HELL YES!  I wished she could be a normal 19 year old, getting ready to go back to school, hanging out with friends @ the pool or just doing whatever!  So the big decision of school still looms over us almost like a dark cloud! Life should NOT be this way for her & I am being selfish when I say it is very unfair.  I keep telling her & myself that GOD has a plan! 

Tuesday, July 24, 2012

July has been CRAZY!!

Can't believe that I have not updated the blog since the first of July!  So, sorry for the LATE update!  First lets start with the battle to get outpatient therapy set up! Let's just say that it took too much time for my liking but after throwing a major MOM fit we started outpatient last week!  Therapy seems to be going good & she has been referred to the Climb program which we are really excited about!  This will mean physical, occupational & speech therapy 3xwk from 8-4.  This program helps people get back into the work place/school and is very intense!  Jordan is super excited because being independent enough to return to Morehead is her biggest goal!
Now that I have mentioned going back to school, lets discuss that touchy subject!  The decision to return or not to return for this Fall has still not been made.  We visited with Morehead officials last week & I can't say enough GREAT things about all of them!  They will be very accommodating if she decides to try it in 3 wks or when she returns in Jan 2013.  Whatever, the decision ends up being it is going to be VERY hard on all of us!
During these past 3 weeks we have really been trying to get into a "normal" routine around here.  Jordan also got her new puppy, Cooper!  He is half lab/half boxer & is the cutest thing ever! Everyone seems to think we have all good days but let me tell you, there are good & bad days! Jordan is still very positive but she is still "not happy" she had the surgery done because of the deficits that are still remaining since surgery. Left facial weakness, eye issues, balance issues, decreased feeling on the right side, & persistent nausea. She understands that it has only been 2 months but she is a young adult that wants everything NOW! She misses driving Daisy(her car) & being totally independent the most! As her Mom it sucks because I don't have that magic wand to make it all better for her.  We take one day @ a time & keep believing!
Now the scary part is getting ready to happen!  I am going back to work tomorrow for the first time in 2 months.  I must say I feel like a new parent leaving my baby all over again except this time it is the parent & the grown child having the anxiety!  Trevor(brother) will be here most of the day with her until he starts back to school & the grandparents will help with getting her back & forth to therapy until she starts Climb.  Then I will arrange my schedule to drop/pick her up on those days. 
Rehab will continue to be a very LONG process & a very EMOTIONAL time for Jordan & all of us.  I thank God everyday for the what he has given me & he will see us through this.

Also, there have been a couple of parents/family members of people who have/haved an angioma diagnosis that have contacted me by email.  Can you PLEASE email me again so I can respond to you!  I accidentally deleted ALL my yahoo emails :(  Yes, a major BLOND moment!  LOL 

Thanks for all the continued prayers/support & please PRAY FOR JORDAN!!

Thursday, July 5, 2012

Getting used to a "normal" routine

Let me tell you we are enjoying our time @ home & cherishing every minute of it!!  Monday we had a girls day and we had a blast!!  We went & saw Brave, went to the pet store (Jordan's favorite place), got our hair cut & jammed some Dixie Chicks riding down the road! Tues & Wen were pretty much spent being lazy after doing some exercises.  Jordan is still fighting the dry heaves/nausea stuff which is REALLY getting on her nerves & has affected her greatly the past couple of days. Today Jordan had a visit with Dr. Kennedy the infectious disease Doctor & it was wonderful!!  The PICC line has been REMOVED!!!  WHOO HOOO  No more waking her up early in the am or having to arrange our schedule around an IV time.  This also means that she can go SWIMMING! 
We are still waiting to get started on outpatient therapy due to some loopholes in communication.  For those of you who know me well, you know this is NOT sitting well with me!  So, we are working @ home on exercises & she is walking tons!  Today we actually went mall walking after the MD appt :)  She can't wait to get to Cardinal Hill for outpatient because her goal is to go back to school come August the 22nd! 

Thanks everyone for all the continued thoughts/prayers during this difficult time!  Rehab is going to be a long road but Jordan has GOT THIS!  PRAY FOR JORDAN!

Sunday, July 1, 2012

Finally HOME!!!!!!!

After being gone for 34 days Jordan finally got to come home on Friday!!  What a blessing this was to all of us :)  The first thing she did when we arrived home was pet Oliver(her cat) & Hershey(the family lab)!  I don't know who was more excited, her or the animals!!  We have set her up a makeshift bedroom downstairs & she is loving it because she gets to be in the middle of all the excitement!  Yesterday I got to spend the day doing laundry, cleaning, & unpacking us for the last month!  I must say it felt good to be able to do ALL of those things!  Jordan also was excited about helping to do dishes, folding clothes, & putting things away!  Last night we made our first big trip out of the house to Walmart.  I was so proud of her because she pushed her travel wheelchair all the way from the car to the back of the "super" Walmart before she sat down. I was so proud of her & if the CH gang is reading this I know they are also smiling :)  Today we are just going to hang out, watch movies, & do some exercises! She would love to go swimming but she has to wait for the PICC line to be removed :(  hopefully sooner rather than later!

Our family can not say a big enough THANK YOU to everyone that has had a part in Jordan's care. First I want to thank GOD, with him all things are possible! Dr. Fraser, Dr. Stafford, Dr. Smith, Lath, & Lindsey~this was the amazing Neurosurgery team that was wonderful & took EXCELLENT care of Jordan. To all the RN's & CST's  @ UK 6th floor tower 2, I say thank you. To all of the Cardinal Hill Gang that became like family to us. Maria,Sandy, Brittany, Kathy, Heather, David, Molly, Robin, Kathy, Lisa, Bev, & all the other therapist that were always cheering Jordan on in the gym!  They were there to help with words of encouragement during the rough days & to pray with us when needed.  To Les & Tammy Jo that have known Jordan her whole life~well I love you both & I thank you!  Dr. Kennedy & Dr. Meek who are the best Infections disease guys in town!  We are greatly thankful for each & everyone of these people!  THANK YOU! Jordan is our miracle!

Now starts the part of outpatient rehab! There will be PT/OT 3xwk for about 8 weeks or more if needed. We are looking forward to working with the outpatient CH gang!  We also will be getting into ophthalmology soon to get the eyes evaluated so we can get see about the double vision & eye issues. The feeling on the right side seems to be getting slowly better :)  The left side of the face is still has a palsy but will hopefully correct in time. The goal is to be back into MSU come August!

Thanks for all the thoughts, prayers, cards, flowers, the dinners that were brought to us by friends, & the words of encouragement.  We thank each & everyone of you!  PRAY FOR JORDAN!

Tuesday, June 26, 2012

Get to head home:)

Well today has brought some GREAT news :) Jordan gets to go home this Friday:) She will continue to have IV antibiotics for another 10days and will also get started with outpatient therapy! While we are thrilled to be going home Jordan is a little apprehensive of the unknown. So please keep her & our family in your prayers as we continue the recovery process @ home.

Saturday, June 23, 2012

Update from the HILL :)~just for you Uncle Jack :)

Sorry I have missed some updates :(  I can't update from the Hill for some reason so I have to send the updates to Tay and then she has to log in & update the blog :(  I have forgotten to send her updates so she hasn't been able to do her part:( 
Jordan has had a wonderful 48 hours!!  No fevers & she is off of neutropenic precautions :)  WHOO HOOO  She is still struggling with headaches/dry heaves @ night but hopefully that will resolve soon!  Therapy is going great & she can walk with a walker on her own as long as someone is there with her if needed!  Seeing my baby girl do this is a MIRACLE!  The right side continues to be "asleep" so that still is a daily struggle, along with the left double vision, & left side of her face being droopy.  Overall we are thankful for her :)  Jordan doesn't see how well she is doing & that may take lots of time but I encourage her everyday & tell her how many obstacles she has overcome just since surgery!  Which I can't believe was 4 wks ago already!  We have FAITH in God!!


Wednesday, June 20, 2012

CH Update

Well today finally brought us some answers to the fever! Looks like it has been antibiotic induced, which has caused her to have something called Neutropenia. This basically means her body can't fight infection because it is not making enough neutrophils. So, she received a shot that will boost her bone marrow to produce more:)  This brings with it contact precautions and until further notice she cannot have any visitors:(

We are both relieved to have an answer, and Jordan had a much better day today! So, we have FAITH that we are back on the right track!! PRAY FOR JORDAN :)

Tuesday, June 19, 2012

1st Day Back After the 2nd ER Visit

Well we arrived back to Cardinal Hill Monday afternoon about 4pm.  I was hoping Monday night would have gone much smoother than Sunday night but it was not to be :(  Monday night also brought a night of fevers/headaches/nausea.  Needless to say Jordan did not get to do therapy today also :( Today has also been a day of fevers/headaches/nausea :(   The infectious disease MD, Dr. Kennedy, saw Jordan today and after evaluation of her he has changed her IV antibiotic regimen, going to start her on Reglan for nausea, & also ordered a gallbladder ultrasound.  Let’s pray his plan works and that the US is negative!  The past 48hrs have been pretty rough and Jordan is very upset that this bump has interfered with her therapy!  There have been lots of tears here lately & we need to replace those with SMILES!!! 

Thanks for all the continued prayers/thoughts!  PRAY FOR JORDAN :)

Monday, June 18, 2012

Back to the ER we went:(

Well the past 14 hrs have been very exciting for us! Jordan's fever spiked again last night, the nausea was back & headache was ever present:( so we were sent back to te ER for evaluation. There is also some fluid build up under the incision that I am also going to get them to look at while we are here. She is still on 2 IV antibiotics and one oral antibiotic as of last night for a UTI. As a Mother this is a nightmare for me. Why can't my baby just get a break? I just want a magic wand to either make her better or to give me all of her pain! We are both tired in every aspect you can imagine, Jordan more so than me. I am begging God to please give my baby girl a much deserving break!

Sunday, June 17, 2012

Whew CH Update

Whew-Just realized that I haven’t updated the blog since Thursday :(  So sorry guys!!   Let’s start with the Friday update!  Friday Jordan had another busy day of therapy!!!  She ended up walking up and down 2 flights of stairs & walked on the treadmill again!!  She is going to OWN the treadmill soon :)  Friday night brought a restless night for us both.  This IV pump not only drives the nurses crazy but also us! 

Saturday was a pretty lazy day.  She only had a ½ hour on the bike and then we were both lazy for most of the day.  Her roommate Kristyn came to visit her, too :) Saturday night Taylor stayed with Jordan, & I went home for the first time in 3 weeks.  I must say it was great sleeping in my own bed & being @ home for a bit.  Sunday, Jordan & Taylor spent the day watching movies & hanging out. It was good for them to finally have “sister” time!  Unfortunately, Jordan also got a fever today :(  So labs were drawn & we found out that she has a UTI and is now on an oral antibiotic. 

As always, thanks for all of the thoughts and prayers. PRAY FOR JORDAN :)

Thursday, June 14, 2012

Back to Cardinal Hill Update

Well, we have been back to the hill since Tuesday & it hasn’t been without some excitement!!!  We arrived late Tuesday & didn’t really do much but get settled back in.  Jordan ran a fever again on Tuesday night & also had some nausea :(  So, Wed morning we were back to having some blood cultures, doing labs, & watching her VS pretty close.  Evaluations continued on Wed morning despite the fever that she had throughout the night.  Jordan said she had work to do and was feeling ok to go ahead with PT/OT/SLT evals.  Some good news was that speech discharged her after their evaluation because that was their plan before she went back to UK last week.  Wed late afternoon brought on another fever but she has been fever free for about 24hrs.  FINGERS CROSSED it stays this way :)

Today Jordan walked on the treadmill with assistance!!!  I am so proud of her & must say it brought tears to my eyes.  David, her PT, has been wonderful with her and always encourages her with a quote from the Bible. Our second God sent person is Molly, her OT.  Today they did something that was fun! She & Molly used water guns to take shaving cream off of a mirror!  It was such a fun & summertime thing & Jordan loved making a mess inside.  I must be honest; all the people that we have come into contact with @ the Hill are absolutely wonderful!  Everyone here always has a smile on their face & an encouraging word to give the patients & families. 

Jordan continues to have that great spirit about things, how she continues to have this is beyond me.  If I was in her shoes, I would have done wanted to crawl underneath a rock!!!!   So, Jordan is back to work & until the next update!  PRAY FOR JORDAN :)

Tuesday, June 12, 2012

Back to the hill we go :)

Well we didn't make it back to Cardinal Hill yesterday because of insurance/precert reasons. So, we will be heading that way this afternoon. Same room :)  Oh, how I love all the RED tap of making things happen!  NOT  Jordan is actually kinda blah today but is ready to get back to rehab.  She will stay on IV antibiotics for the next 10 days and then will have her PICC line removed. This setback has been pretty rough on her mentally & physically.  So, going to rehab this time will be a little tougher on her than the first time around. So, Jordan & I have decided that visiting hours will be reduced so she can get her much needed rest!! So visiting hours will be Tues/Thurs  4-8 and Sunday 2-7.  She hopes everyone understands & she can't wait to see everyone!!!
We thank everyone that is praying for her.  I can't believe how many people are out there rooting my little girl on!  We don't know how to repay everyone except to say Thank you.  We love all of you!! 

Sunday, June 10, 2012

Much better today :)

I must say that the past 72 hours have been pretty tough on all of us but today is good!!!  The spinal fluid cultures are still negative and she has had no fever for 12+ hrs!!! So, if she can stay fever free today we will head back to Cardinal Hill tomorrow!  We are both excited about this & she is ready to get back to work! She will continue to be on IV antibiotics for about 10days & Decadron for about 6 wks.  Jordan is perfectly fine with this because she will no longer have to be stuck because of her PICC line :)
We thank everyone that is following the blog for all of the prayers!  Our new saying around here is " If GOD brought you to it, HE will bring you through it!" PRAY FOR JORDAN!!!!

Friday, June 8, 2012

Update on Jordan 6/8/12

Well after an exciting non emergent ride in an ambulance,(Jordan insisted NO sirens) a long day in the ER consisting of a CT scan of her head, chest xray, multiple labs, MRI of head & lumbar puncture Jordan was admitted. Last night was THE roughest night she has had since being in ICU right after surgery.  Her VS were all out of whack, horrible headache, and  her fever spiked at about 103.4 :(  Jordan is no complainer so when she says doesn't feel good, it is bad! 
Today she is much better after having some IV antibiotics, fluids, & steroids.Her poor little veins have been all beat up so today she received a picc line in her left arm so NO more sticks :)  She was happy about this!  The prelim diagnosis is Aseptic Meningitis.  Dr. Fraser said he would consult with the Infectious Disease doctor to make sure & that she would be in the hospital until after all the cultures results have been reported.  So, looks like we are back to having a  LOT of TV channels!  The only thing about being @ UK Jordan likes!  LOL We hope to be back @ Cardinal Hill on Monday to start back with PT/OT/SLP!!!!
Jordan's positive attitude and finding the good in everything still amazes me! Thank you for all the thoughts/prayers.  We appreciate all of you!! If you have called/texted/emailed/FB/posted a reply on here, I more than likely have not responded but I have seen/read them all & I thank you & sorry I haven't gotten back to you. Please continue to  PRAY FOR JORDAN! 

PS:  Crystal(pearlsized angioma)  she loved the card & thought that was the kindest gesture :)  TY
       Morehead State University,  thanks to the Honor's house and the MSU University bookstore
        & Marketing Department for everything!  MSU has shown wonderful support for Jordan & she  
       loves her MSU family!!!!

Thursday, June 7, 2012

A bump in the road:(

Jordan is being admitted to UK today for a elevated WBC, low grade fever, & bad headaches. She has had a CT, going to have a MRI, has had lots of labs, and will have a lumbar puncture later :( I must again how much we love DR. Fraser because he is out of town but called me to tell me what was going to happen! As always her spirits are good but she has felt better:( PRAY FOR JORDAN

Tuesday, June 5, 2012

Cardinal Hill Day 7

Well our day started @ 7 am, so she is MORE than ready for bed tonight!!!   She has been averaging 1.5 hours of just physical therapy alone plus having occupational & speech therapy!!!  One neat thing that she got to do today was get into the pool today for PT. Jordan said this should not be how my first swim of the summer should be!  I told her to hang in there, work hard, and we would be @ the lake before she knew it!! She is walking everywhere with her walker, & I am a very PROUD mom of all of her hard work!!!

We must thank some longtime friends, the Francis’s for dinner tonight!  Jordan loved it & we enjoyed visiting with you guys!  Jordan also had some visits from some SOKY family tonight!!!  Casie & Levi came to visit & Levi gave Jordan his GOLD medal from the games this past weekend for good luck!!  We also ran into Sherri today while we were outside for a walk!  We loved seeing all of these athletes today, because they have been such a big part of the girl’s life!  

Thanks for all the continued prayers!!  PRAY  FOR JORDAN :)