Friday, November 28, 2014

A Promised Update

Update:
OK, I promised frequent updates, so here goes. On Wednesday night, Haley was in agony with a severe headache. At 11:30, when Larry could no longer take it, he put her in the car and headed to the ER. Dr. Henderson was called in the middle of the night, and he said that we should call him again in the morning (Thanksgiving day).  She was discharged and they got home at 3:30 am.


We spoke with him on Thursday and he was asking a lot of questions. He said that it is probably more than one thing going on with her. He wants us to take her blood pressure every 4 hours and also to check her blood sugar daily. He suspects that her spine bones in her neck are unstable, which is causing her fainting, but he wants a special MRI done in Washington, DC, to know for sure.


Meanwhile, she is fainting more and more. Just today, I think she has fainted 10 times. Folks, this is so, so hard. Tonight I asked her if she thinks we should rent a wheelchair again (I do). She shrugged and said, "maybe for when I'm out of the house."  I think she should be in one in and out of the house. The stress level in our house is HIGH!!  When she faints, she goes down hard and usually awakens crying in pain from whichever body part was the latest casualty. She has hurt her nose, the orbit of her eye, her head, her arm(s), her shoulders, her knees, etc. from the fainting and subsequent falling.


It is so hard to believe that just a few short weeks ago she was driving herself to work and working up to 9 hours at TJ Maxx!! How did we get here again?


Thanks for your continued prayers. God answered the one about Dr. Henderson calling Dr. Marsh back. (That happened on Wednesday afternoon!)


Please pray for Haley in her discouragement. As you can imagine, it's very difficult to be so debilitated once again. She's getting cabin fever and would love an occasional outing if anyone wants to come by and take her out. If that's something you want to do, just contact her through FB.


Also, I am two weeks away from finishing my semester in grad school. It's hard to think about studying for a final exam and also wondering when we need to go up to Maryland to see Dr. H. We so appreciate all of your kind words and prayers. They are our sustenance.

Tuesday, November 25, 2014

A Bump In The Road

So Sad To Write This...

Well, friends, I am sad to say the Haley has suffered a recurrence in her fainting. She had gone for more than a year without fainting, and about two weeks ago she began fainting again. She has also suffered from headaches (likely from hitting her head while fainting), and her usual nausea and vomiting. 

ER Visit


Last Wednesday night we took her to the ER for these symptoms plus she had partial vision loss in her right eye. The ER doctor was very kind and compassionate, but he really didn't know what could be causing the symptoms. He ended up calling Dr. Henderson, the neurosurgeon who did the brain surgery on Haley in June of 2013. Dr Henderson wanted him to do a scan of her head to make sure she didn't have a rare type of blood clot in her head, which, thankfully, she didn't. She was put in the neck brace again because they think the fainting may be due to instability in her cervical spine. (We knew shortly after her surgery that she had a good bit of abnormal movement in her neck bones, and we were told that it would probably progress.) Also, she has been put off of work until at least December 1st.

Our sweet pastor, Burress, came to the hospital to comfort and pray with Haley (and us). I snapped a quick photo of him encouraging Haley. Even in the most difficult times, we are blessed with faithful friends who watch over our souls!

Will you pray?

Please pray for Haley in the following ways:

  1. That her fainting and pain will go away very soon.
  2. That she will be able to endure the discouragement of going "backward".
  3. That Dr. Henderson will return the phone calls our family doctor has placed and that he will have a plan to help her.
  4. For safety and protection for Haley, who is fainting (and falling) all over the house. It's so scary to watch her fall hard and we worry that she may hurt herself
  5. For Haley to be able to tolerate the neck brace. For some reason, this time around it makes her feel like she can't breathe. 
  6. For endurance for all of us. It is incredibly stressful to watch this happen.
  7. That Haley will soon get back to her job at TJ Maxx. She loves working there and has made some sweet friends there. She really misses it.
Thanks so much in advance. I have not kept up with the blog because there wasn't much to report, but I promise that I will keep you all posted from here on out!

Thursday, September 26, 2013

Praise Reports!!!

Not All Heroes Have Capes, But This One Has A T-Shirt

We travelled to Maryland today for Haley to have a follow-up appointment with Dr. Henderson. He was absolutely delighted at her progress and said that she looks wonderful.  He examined all of her scars and spent some time working with her on correct posture. He thinks that her headache is due to the imbalance in her neck muscle strength. He wants her to re-learn how to stand up straight with her head directly above her neck. He thinks that in time this will cause her headaches to lessen and maybe go away entirely!!!

After he was through with the exam, Haley presented him with a lovely card where she expressed her gratitude to him for "saving her life". He seemed genuinely touched and made sure he had the card as he gathered his papers up to leave the room. Then she pulled out one of her "Fight Like a Zebra" t-shirts and gave it to him. He was very thankful. Here is a picture of her presenting him with the shirt:

 
 
And here is one of the two of them with the shirt:
 
 

 
 
When the appointment was over, there were hugs all around. Dr. Henderson was genuinely happy to see that his care had made such a difference in the life of this patient. And, of course, we are forever grateful for this man, his gifts, and his compassionate care.
 
We are all so delighted that God led us to this wonderful doctor. His waiting room has several scrapbooks filled with thank-you notes, pictures and testimonials from grateful patients. This morning, as I was looking through them again with our dear friend, Kendra, (who came along for the ride), I realized how all of these stories are so similar. There are so many people just like Haley who have searched for years for someone to help them. Some of the stories sounded exactly like Haley's. It's amazing to think that God has gifted this man so specifically to help these people.  We are truly blessed.

Speaking of blessings, we finally have a total from the Hope for Haley Party with a Purpose. And that amount is.........(drumroll please)...........


$14,080.36
 
 
We are absolutely blown away by the generosity of our family, friends, and even perfect strangers who have donated this money to help us with the hospital bill. We still don't know what our portion of it will be, but we know that we have something in the account toward whatever part of the $64,000 we will have to pay.
 

Prayer Updates

Please continue to pray for Haley as she still struggles with headaches and some other body pain. She also has some nausea and vomiting, even though that is much improved since her surgeries. We are so grateful for everyone's support and will continue to pray that God will bless you all as you have blessed us.

Sunday, September 1, 2013

What A Party We Had!

Beyond Our Wildest Dreams

The Hope for Haley Party with a Purpose was a smashing success. None of us had any idea what to expect in terms of turnout, but my oh my, I was blown away. There were so many people that it looked more like a sea of people. Our friends successfully transformed an empty lot into what looked like a festival. There were several tents with vendors underneath and a makeshift bandstand (a flatbed trailer). Also, folks brought lawn chairs and blankets, plus we borrowed tables from Covenant Presbyterian and folding chairs from Eastern Mennonite University. I tried to capture it in photo form, but I'm not sure these picture do it any justice.




Donations came pouring in from everywhere. Local businesses generously gave gift cards and goods to be raffled off. There was a 50/50 raffle that, when won by a gentleman named Nick, was donated back to the cause. So incredibly generous. Thank you, Nick. Also, T-shirts were snatched up and adorned many of those in attendance. Fight like a Zebra!! We still have several in all sizes and colors. Send me an email at chicofam7@msn.com if you want some. We would love to sell out of these before too long.

 

Other things that were sold were these decals. These were made by our good friends, Lori and Mark Huenerberg at their business in Virginia Beach, Tidewater Emblems. They are a great way to show your support for Haley and show a zipper (for her scar) opening up to a new sunrise, which depicts the hope we have that her life will improve. It also has two butterflies (new life) and a Bible verse about our hope in the One who delivered her from the brink of death. These are very cool and are a steal at $2.00 each. I would love to see them on cars all over. In fact, this morning as I was leaving church, I noticed one on the care next to me!! (Go Gina!!) How encouraging that was to me. Here is a pic of the decal...
(If you want one or more, contact me at the email address above.)


Live music was provided by The Responders, Peter Driver,  Burress McCombe, and Mike and Seth Marsh. We are so grateful.



As for the food, what can I say?  Kathleen and her crew did an outstanding job of keeping up with the unbelievable demand. The line snaked down to the end of the parking lot for the entire event. People waited for an average of one hour for the delicious Grilled Cheese Mania offerings, and it was well worth the wait. In fact, at least one person said that he stood in line for an hour and a half! Those are some dedicated people waiting for some delicious food!! Kathleen never even got out of the trailer/shed to meet any of my family or visit with the jillions in attendance. She did peek out a few times to behold the sight! She said that she never even had time to snap a picture!  But I did...



How in the world can we begin to say "thank you" to everyone for their help. I saw people who had travelled from different cities and states just to support our family. It absolutely amazed us. We had friends come whom we had not seen in 15-20 years. Haley said it felt like it was her wedding or something, because so many came from far away. (I reminded her that she, in fact, does not have a groom!  Ha ha.) She was decked out in a tiara and sash in honor of her birthday, which was the day before. Here is a picture of her with our roaming 50/50 ticket seller, Steve. (There's Haley sporting that million dollar smile!! So great to see!)

 
 
 
Two birthday cakes were donated so we could all celebrate Haley's 21st birthday. One of the cakes even had the Hope for Haley sticker made out of icing on it! So cool!! Thanks Jerry and Grace! Here's a pic of that cake...
 
 
 
There was a sign thanking all of the businesses and individuals who had donated things to make the event so successful. It's really mind-boggling to see how many generous folks there are in our community who care so deeply about a sick girl and her family. It really warms my heart and humbles me greatly. I only hope that we can one day return these kindnesses.


Thank you, again, to all who helped in any way. We are so very grateful. If anyone still wants to donate, you can either use the "donate" button to the right of this blog, which is linked to a PayPal account that deposits money right into the Hope for Haley account. Or, if you would prefer, you can make checks payable to Hope for Haley and send them to  PO Box 570, Harrisonburg, VA 22803. I will let everyone know how much we raised when we get the final tally. So stay tuned, and, again, thank you everyone, a million times over. We love you all so much!!!

Friday, August 30, 2013

Tomorrow We Party!!

Media Darling

I haven't blogged in quite a while because sometimes it seems like there isn't much to say, but this week has been crazy with activity. On Monday morning, I got a call saying that a reporter from the local TV station wanted to come and interview Haley for a news story. I had about 2 hours' notice, but I was able to race home from work just in time to meet the reporter at our house. She had a big camera with her and proceeded to interview Haley about her life, especially these past two months. Haley did a great job and looked so poised and lovely. I snapped a picture of her talking to the reporter in her new room.
 
And here they are in the living room. Haley was explaining about all the get well cards she had received.

 
 
On Tuesday morning we awoke to see a huge spread about Haley in our newspaper. The reporter had come out last Thursday and interviewed her, Larry and me. She brought a photographer with her and he took tons of photos. We got to explain about Haley's surgery and the fundraiser at Grilled Cheese Mania. It was really a great article.
 
Then on Wednesday we found out that our local AM talk radio station wanted to do a live interview with Haley, me and Kathleen from Grilled Cheese Mania. Originally I told Haley that I would not be able to attend because I had to work. At the last minute, I was able to sneak away long enough to be on the air with her and Kathleen. Here is Haley just before we went on the air.
 
 
 And here she is talking to the DJ, Frank Wilt.


Tomorrow's The Big Day

On my way home from work this evening, I went by the event site and this is what I saw on the telephone pole:

(Great job by Ben and the gang at Mod Displays!!)

Details About Tomorrow


We are so excited about the fundraiser tomorrow.  It will be held from 4-8 pm at the Grilled Cheese Mania food truck. We will have items for raffle, including many gift certificates from local businesses. People have been incredibly generous. It is really quite overwhelming. We will have jewelry vendors, T-shirts designed by Haley and her friend Stephanie, and other wonderful items. Of course, the delicious food that Kathleen and company whip up at GCM will be available for purchase, with the proceeds going to Hope for Haley to help with medical expenses.  I'm also excited about the live music, featuring the band, The Responders, from New York (including my own dear brother Arthur!)  We will also have some other local musicians playing too.

So come on down and join the fun. Please park in one of the adjacent lots (the bank next door has graciously given us permission to use their lot), bring lawn chairs and blankets and plan on having a wonderful day with us. We will even have a little birthday celebration for Haley (don't tell her), as her 21st birthday is today.

As always, thanks for your support, friends. Please continue to pray for sweet Haley. Last night she was up all night with severe nausea, vomiting and pain. It breaks my heart to see her suffer so much. It' s such a great thing that she no longer faints  and that we finally know what is wrong with her, but the reality is also that Ehlers-Danlos is incurable and usually involves a great deal of pain. I plan to do some research to see if we can find an EDS expert somewhere who can help her with the ongoing, chronic pain. Please keep her and us in your prayers!

Monday, August 19, 2013

Party With A Purpose--Here We Come!!

The Plans Are Coming Together

Tonight we had a planning meeting for the big fundraiser. We will be having a fundraiser on Saturday, August 31 from 4-8 pm. We have changed the venue to the Grilled Cheese Mania Food Truck on Route 42 in Harrisonburg.

We will have live music and the yummy GCM sandwiches will be available for purchase with a portion of the sales going to offset the medical bills we have incurred. Tonight a group of ladies met at our house to plan. What a wonderful group of women. Most of them could, I'm sure, split an atom with their bare hands. Ha ha. Instead, they chose to use their talents to help our family raise money! We are so blessed!!

The event will also include a bake sale and t-shirts and jewelry for sale. If that were not enough, we will be raffling off several wonderful items! Our hope is that it will be a fun night of celebration with friends and family (they are coming from New York and New Jersey!!) and that we will raise a bunch of money to help us pay for the hospital bill for Haley's surgery in June.

Please  mark your calendar and make plans to attend. Haley will be there (it's the day after her 21st birthday, so she will really be in the mood to celebrate!), and she would love to see everyone who has supported her and our family during this long, tough journey.  So come on down and enjoy the food, music and company. Bring lawn chairs and blankets and plan to spend some time celebrating what God has done in healing our sweet daughter.

Thursday, August 15, 2013

A Zebra Reunion and A Big Party

Party With a Purpose

Well the details are coming together for the big celebration/fundraiser for Haley. The date is August 31, and it will be from 4-8 pm. We will hold the event at our friends' farm in Mt. Crawford, Virginia. At this point we are planning a big celebration with food by our dear friends at Grilled Cheese Mania! Yum!! (More details to come.)

Right now we don't have an exact amount that we will owe for the medical treatment Haley had in Maryland. We do know that the hospital bill is just over $64,000. Of that, we have no idea what we will be responsible for. I called the insurance company the other day, and they said that they had denied the entire claim. My heart began to beat fast, and the woman on the phone said that they had requested more information from the hospital. I said, "So I don't need to panic?" and she said, "No, don't panic." I said, "Good, because that's more than our first house cost!!"  I keep reminding myself that God will provide for all our needs.

Any Helpers Out There?

We are still in need of a few folks to help with planning and behind-the-scenes work. If any of you are local and would like to volunteer, please send me a message on Face Book. We already have a nice group of folks who are committed to making this a smashing success, but we may need help erecting the giant tent on the day of the party, setting up, preparing food, doing publicity, and other things. So if you are gifted and so inclined, jump in! I can promise you we will have a great time!!

Update on Haley

Haley continues to make steady progress. She is continuing to go to physical therapy twice a week, and will soon add another day of pool therapy. She is getting stronger, and takes daily trips up the stairs to "visit" her new room. She loves it and just enjoys sitting on the bed and taking in the scenery. Right now, climbing the stairs still takes a lot of effort, so she will remain in the living room in the hospital bed for the time being.

Visit from a Fellow Zebra 

Last weekend, she had a visit from a new friend and fellow "zebra" named Sarah. They were both patients in the hospital in Maryland. Sarah had her surgery the day before Haley and they became fast friends. Sarah and her mom traveled from Vancouver, British Colombia, for a follow-up appointment with Dr. Henderson in Maryland. Haley and Sarah conspired to see if Sarah's mom, Sue, would drive down to our house in Virginia so the girls could visit. I thought to myself, "there's no way this lady is going to agree to drive 2 1/2 hours so they can see each other." I was wrong. They did  just that, arriving on Friday around 11:30 am.  They stayed until late Saturday night (actually 1 am Sunday morning). The girls had such a great time. They went for a drive on the Skyline Drive (Sue drove), and went to a Safari Park about an hour from here. They topped off their evening taking in a local production of Les Mis, starring our friend, Andrew. (It was Haley's third time seeing that production!)

Here's a picture of Haley and Sarah at the dinner table. Two zebra friends.


 It is so nice for Haley to have a friend who is her age who is going through much of the same things. And, she and Sarah have so many other things in common. When Sarah and Sue left, the girls hugged each other and said, "I love you" to one another. What a treat. Thanks go to Sue for making the sacrifice of driving all this way.  Here they are at  the Safari Park. Note the Zebra trash can!

For those of you who are wondering about the significance of "zebras", it is a term used for people with rare illnesses. You see, the saying comes from an adage that is taught to medical students during their training. They are told, "When you hear hoof beats, think horses, not zebras." This means that the vast majority of illnesses that doctors will see in practice are those common, ordinary things (horses) and much less likely to be the rare, strange illnesses they've studied in med school (zebras). Hence, anyone with a rare illness is considered a zebra. Many of them (like the lovely Sarah) have embraced this idea and collect all things zebra. Actually, I gave Sarah a zebra bag to go with her zebra purse, etc. In fact, if you look closely at her neck brace, you can see that she's decorated it with zebra stripes.

Here's one more shot of the two goofballs going to Walmart. They said that they got a lot of stares. A girl in a neck brace pushing another girl in a Wally-world wheelchair. I'm sure I would have stared too! haha