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!