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! 

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!!

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!

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!

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.

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!!

VISITING HOURS ARE TUE/THUR 4-8 & SUN 2-7

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 :)

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 :)

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!

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 :)

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 :)

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!! 
PRAY FOR JORDAN :)

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!!!!

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!!!!

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

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 :)

Cardinal Hill Day 6

Today Jordan had a full day of therapy & it has worn her out!!!  The best news of the day is she & I can now walk in the room/hallway with her using a walker!!  I think this is a HUGE step for her :) The vision is still a big issue but one that is being helped with her cool pink glasses being tapped on that left lens !!!  The feeling on her right side is still a huge issue also.  She gets very aggravated because she can’t feel that side during therapy :( She understands that this will come back in time but that still doesn’t help at that moment!!  

I was reading her all the replies to the blog today, and she was SHOCKED at all the people who are following her progress!!!  She also loved hearing all the words of support from all of the other people that have had their lives affected by cavernous angiomas!!!  This makes her want to work even harder!!!  PRAY FOR JORDAN!!!