More Thanks"given"(Dr. Graham appt.#3)

Wow! So much to share with everyone, I am just not sure where to begin...and it is all good! For starters we had another great appointment with Dr. Graham. It is such a treat for me to just sit back during these appointments and watch Kristen work her magic.

During the past few years I have encouraged Kristen to gradually take more control of the doctors appointments(even though the doctors almost ALWAYS direct their questions to me, as if Kristen isn't in the room) but she has easily managed to do what I suggested and especially today with Dr. Graham. He is different in that he directs his eye contact and comments to her. As usual, she went prepared with the notes she jotted down on notebook paper last night of questions/concerns she wanted to discuss at todays appointment (I am sure this doesn't surprise my sisters that, like me, Kristen is a list maker) and as a result, the appointment was very productive.

Following the appointment, Kristen's mind was at ease about some of the concerns she verbalized and I could sense how empowered she is feeling. Dr. Graham was very receptive to Kristen's written list, he offered some much needed reassurance and again, he was very complimentary of her maturity and the feedback he is receiving from her therapists. The two of them(Dr. Graham and Kristen) are developing a great rapport and this helps Kristen feel more confident about trusting him.

Later today, we were informed that Humana authorized 20 more occupational/physical therapy appointments so this was also very good news. With this news, we will likely be staying in Nashville until December 16th. We celebrated the great day by attending Lipscomb University's Hanging of the Greens program tonight with Lauren and her roomie, Calie. We enjoyed live Christmas music performances by Amy Grant, Melinda Doolittle, and Point of Grace. It was awesome, uplifting, and definitely put us in the Christmas spirit!

Perhaps the very best news is that as of late this afternoon, Kmac's Crew has grown to 63 team members and has raised more than $4100 for the Arthritis Foundation. That number will soon grow as Kaitlyn Brennan, my sweet second cousin in Arizona, taught a Hip Hop class on Sunday as a fundraiser for Kmac's Crew and raised $150!

There are no words to accurately express how we feel about the response to Kmac's Crew. Never did we expect or even anticipate this level of support from friends, family, and a few generous strangers. I am speechless but nevertheless, very grateful and appreciative. We, as a family, have never felt more embraced and cared for!

Another thing that put a big smile on our face is a song about "Kmac's Crew" that my precious neice, Addie May, sang to us over the phone on Thanksgiving Day. I am quite sure that her mommy(my sister, Colleen) along with my sister, Holly, created the clever lyrics. We can't wait to share the lyrics - to the tune of  "Jingle Bell Rock" - and have a sing-a-long with Kmac's Crew at the Jingle Bell Run/Walk.

In closing, I'll say that I hope your Thanksgiving Day was as memorable as ours was. This year, though our family has faced many challenges and disappointments, and we are currently divided among two households (make that 3 if you count Lauren's dorm room!) we still have so much to be thankful for...including the treasured gift of friendship and the neverending love and support of family.

Sunny Saturday(wrap up week #2)

 All in all it has been a productive and celebratory week in Nashville. We are now feeling more confident that there will be some positive results for Kristen from the therapy program. We absoblutely could not be more proud of her obvious committment and resilience. It is very clear to Dr. Graham and all of the therapists that Kristen is giving 110% and because of that she is receiving alot of positive reinforcement, compliments, and "high fives".

One of her therapists was telling me yesterday that at least once during each of her therapy sessions, Kristen's muscles go into spasm, or she'll have quiet tears of pain and/or frustration rolling down her cheeks. She explained that when this happens they suggest that Kristen take a short break but she always refuses and just keeps pushing herself, so sometimes they must insist that she lower her expectations of herself. Yep, that's our girl!

Kristen was fitted for arm splints this week and eventually may also be receiving leg splints. Their purpose is to hold the joints in a normal position and decrease the likelihood of contractures forming. Contractures can occur when a joint is repeatedly not used correctly or held in an abnormal position and the bone molds itself to that position. Fortunately, Kristen must only wear the arm splints at night when she is sleeping.

She has been fighting an upper respiratory infection for the last few days and is still feeling really crummy. I knew that it was only a matter of time until she picked up another infection because...well, that's what Kristen does. Those that know her best realize that she seems to catch "everything". The timing is bad and it was a bummer that she had to turn down the opportunity of meeting a friend from school for dinner last night that is here visiting family, but Kristen is "barking" her head off and we don't want to spread these germs.
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I have spent most of the day doing laundry. It has been a long time since I had to tote all the dirty clothes to a laundromat and insert money to make the washer work. It feels like being a college student again! Except this time I have the best roommate ever!

Well, it is a beautiful sunny day here and we are off to a park for a picnic dinner. I hope all of you are enjoying a nice relaxing weekend and happily anticipating the upcoming Thanksgiving holiday! Thanks again to each of you for the support, encouragement, and continued prayers. Go Vols-beat Vandy!
    

Dr. Graham appt. #2

     Dave is on his way back to Knoxville tonight following a very positive appointment today with Dr. Graham. Here are the high points...

1. Kristen's MRI of her right hand and wrist last Monday reassures Dr. Graham that the current therapy  program will not cause any irreversible damage. Good news!

2. He is pleased(as are we) with Kristen's current status considering she is managing on only 4 medications. Keep all fingers crossed!

3. Great second impression of Dr. Graham-he was very approachable. Sigh...relief!!

4. Based on reports from all of Kristen's therapists stating that she is one of the most committed  teenage patients they've had, Dr. Graham decided to release her for Thanksgiving as long as she completes "homework therapy" consistently 3 times a day. YAY!!

Kristen and I will plan to travel back to Knoxville on Monday after her therapy appointments, then load up in the motorhome with the family Tuesday morning and head towards Delaware. I really look forward to the good nights sleep awaiting me when, for a few nights, we will all be sleeping under the same roof!

That's all to report on this wonderful Wednesday. Kristen is trying to knock out some schoolwork and needs the computer. She is exhausted and her bed is calling her name so...better not delay!

Therapy update/Nashville address

Kristen's physical and occupational therapy is in full force! She spends time with 2 physical therapists and 2 occupational therapists each day, as well as completing "homework therapy" here in the apartment both morning and night. Emotionally and mentally she is tolerating it very well, just as we expected. It is painful for her but she doesn't complain.

Her therapists expressed their appreciation today for her cooperativeness and positive attitude and shared that they already see some improvement in her muscle tolerance. However, tonight we notice some swelling in both of her knees and hope it will not slow her progress.

During Kristen's initial evaluation last week her therapists identified the joints that have the most limited range of motion. Her ankles, wrists, fingers, and hips will receive the greatest focus as they are the biggest trouble spots. We had no idea how much function she had lost in those joints. It is no wonder to us now that even activities of daily living were so exhausting for Kristen...and still are.

At the end of Kristen's therapy session late this afternoon(about 4:00pm) her therapist advised me to keep Kristen moving and not let her nap until after supper. So, as we walked to the car Kristen said, "I am so hungry...let's go ahead home now and have an early dinner." Hee!! I didn't fall for it but still thought it was a good try! Instead, we stopped in at Lipscomb for a short visit with Lauren which helped Kristen forget that she really wanted/needed a nap before dinner.

Dave is back in Nashville with us tonight. He wanted to be here for our appointment on Wednesday with Dr. Graham, a pediatric rheumatologist at Vandy Children's Hospital. We are hoping that good communication will come easier at this appointment. The Arthritis Foundation and all of the therapists seem complimentary of Dr. Graham so perhaps our first appointment just caught him and/or us on an unusually bad day.

I will wait to post again following our doctors appointment on Wednesday. Some have asked me to post our address. Here it is:        801 Inverness Avenue #A-5
                                                             Nashville, Tennessee  37204

Keep those prayers coming...they are much appreciated!!
    
  

Friday's Blessings(wrap up week #1)

Thank you, Jesus!... Humana finally blessed us with great news today! They authorized the therapy appointments but only the first 20(which will be used up in two weeks since Kristen will be going twice a day!). Kristen's doctor has requested a minimum of 40 sessions, with the possibility of 60 sessions by the time it is all said and done. This means that the therapists will need to do another evaluation in two weeks(which also comes with an additional charge) and process, yet again, another request.

Why does health insurance make things so difficult? When will they realize that some of their ridiculous requirements often end up costing both themselves and the patient more time, money, and setbacks? Such a frustration! But...I am mostly thankful to Humana today for the good news.

Another frustration is that we are in a bit of a "holding pattern" and must just be patient. We are waiting to find out at the end of next week if Kristen will be released to travel to Delaware for Thanksgiving. It is one of our annual family traditions and has happened every Thanksgiving since David was born. It will be a big disappointment for Kristen and I both if we must stay behind. However, regardless of where we happen to be on Thanksgiving Day, I must remember that I have so much to be thankful for.

Speaking of being thankful...a dear friend from Knoxville texted me today to say that she was at Kristen's school, Farragut High School, and noticed that handmade signs were posted  all around the school. These signs are promoting the Knoxville Jingle Bell Run/Walk and encouraging others to join "Kmac's Crew" to help raise funds for the Arthritis Foundation.

Wow! Kristen has not even attended classes since October 21st and her school is both thinking about her and recruiting more members for her team-something that they know she can't do for herself right now. From the very beginning FHS teachers, current students, and former students have been donating to and/or joining "Kmac's Crew". Farragut High School is certainly a real blessing that I am thankful for.

As if all of this wasn't more than expected in one day...my sweet cousin, Laura, from Arizona called to let us know that her family is organizing a community fundraiser with all proceeds being donated to the Arthritis Foundation in honor of Kristen and her team, "Kmac's Crew". Once again, God is really reminding me today that I have so much to be thankful for. I really am...so very thankful.

What is RND and JIA?

Reflex Neurovascular Dystrophy(RND) - an abnormal short circuit in the spinal cord causing a pain signal to travel through the neurovascular nerves resulting in constricted blood vessels. The decreased blood flow deprives the skin, muscles, and bones of oxygen which leads to a build-up of lactic acid. The decreased blood flow, lack of oxygen, and acid build-up causes extreme pain. RND often develops following an injury, surgery, or illness. It is commonly seen in conjunction with inflammatory illnesses such as arthritis.


Juvenile Idiopathic Arthritis(JIA) - see video story below.

Juvenile Arthritis/ "Kmac's Crew" (video #1)

A whole bunch of "New"

We(Dave, Kristen, and I) arrived here in Nashville on Monday. Things have been absoblutely crazy busy: MRI and hotel check-in Monday night, tour apartment and sign contract Tuesday morning, physical and occupational therapy evaluations Tuesday afternoon, move into the one bedroom furnished-apartment Tuesday evening, and aside from all that "busyness" we managed to fit in a meal at The Pancake Pantry(a favorite!) and to take Lauren out for dinner.

Vanderbilt Childrens Hospital put us in touch with a temporary housing company that they have a contract with and we were shocked and very happy to find that our apartment is less than ten minutes from Lipscomb University so we are conveniently close to Lauren. It is also very convenient to the hospital and the Vandy rehabilitation center. It's a good thing because finding my way around an unfamiliar city is not a strong point. It took Kristen and I more than an hour to find a Kohls!

Yesterday morning Dave headed back to Knoxville while Kristen and I unpacked/got settled in and most importantly...Kristen worked hard at therapy. She has four therapists-two for physical therapy and two for occupational therapy. She will spend time with each of them every weekday, and additionally, she will be sent home each day with lots of  "therapy homework".

We received alot of education from the therapists about Reflex Neurovascular Dystrophy(RND), how it applies to Kristen's case, and what her greatest challenges will be during therapy. I will go into more detail about that in another post.

At this time, I must share with each of you how humbled our entire family is by the outpouring of prayers, generosity, support, and encouragement- both for your response to "Kmac's Crew" for the  Knoxville Jingle Bell Run/Walk and this unexpected journey to Vanderbilt for 4-6 weeks.

Every card, visit, phone call, text, email, and Facebook message has uplifted Kristen's spirits and is very appreciated! She has received at least one message everyday in response to her video story since the night it was posted. It has meant so much to each of us.
  
Last I checked "Kmac's Crew" has 41 team members and has raised more than $2,200 with your help to benefit the Arthritis Foundation. That is so awesome and is such a reminder to us how generous and loving our family and friends are. Thank you for blessing us.