Friday, December 19, 2014

Dr. H, the thinker

Our visit with Dr. Henderson yesterday was a long one. The appointment was for 3 pm, but we waited a long time in the waiting room (he was running behind). We got out of there at 7 pm!  Haley passed out about 6 times in the waiting room in her wheelchair. (Once, I timed her as being out for 12 minutes!) Needless to say, it was a long, tiring day for all.

Dr. H was really stumped by her. He had the disc with the MRI of her head and neck up on the big screen when we got into the exam room. He saw no evidence of anything on the scan that would explain her symptoms. After much thought, including him leaving to go back into his office for about 30 minutes to think (per his NP, we were the only people still there, and he was "thinking"). He believes that she has two things going on:

1. He thinks that these episodes are not fainting at all, but are non-epileptic seizures (also known as "drop attacks"), where she loses muscle tone everywhere. This would explain why she can often hear during these attacks and can quote what was said while she was "out".  He thinks that the cause is due to mast cells activation syndrome. We are not exactly sure what that means, but I know that mast cells are important in immune function and it seems that they can go haywire to varying degrees. He speculates that her mast cells are attacking her brain stem, (his words) and he feels that this can be turned around with medications and a special diet.  He said that he sees this a lot in patients with Ehlers-Danlos Syndrome, which she has, and that he currently has about 100 patients with this. He prescribed many medications to "stabilize" her mast cells and he wants her to follow a low histamine diet (or even a ketogenic diet). This is a lot of information for us to process. I asked where the specialist for this condition is, and he said the best doc is in New York--(road trip, anyone?) We will plan to go up there as soon as possible, but the doctor likes people to be on the meds/diet for at least a month before she sees them.

2. He thinks Haley has "tethered cord syndrome", which is also not uncommon in EDS patients. She has chronic leg pain, neck and back pain, and some odd urinary symptoms. He poked her with a big safety pin, which she barely felt in her lower extremities, and checked her reflexes and muscle strength. He would like some further testing, such as an MRI of her low back and some special tests of her urinary system before he considers surgery to "untether" her cord.

This news was very difficult for Haley, as she was hoping that he could do surgery to help her to stop fainting, just like last time. Her life is so hard now, and she misses being able to do what she wants. To be dependent on others for everything (including bathing) is very demoralizing.

My thoughts are that this condition has been present for a long time. Dr. H listed the "triggers" for mast cells misbehaving, and one of them was structural problems. Haley definitely had a big structural problem before he corrected it, so I think that maybe her previous fainting was due to mast cell problems. Other triggers are stress, some foods, some medications, and environmental factors.

Even though I am in the medical profession, I must admit that I have some research to do on this condition, but for now, I am just trying to be her mom and support her in whatever way I can. We are grateful to you for your support as well. As we were in the exam room waiting for Dr. H to come back, I knew for certain that there was an army of folks praying for wisdom for this man. Our phones were blowing up while he was in with us, as many were calling and texting to find out what he said. We have had many Facebook messages from people saying they are praying for Haley and us. Thank you all for that. We are truly grateful.

Please continue to pray as follows:

  • For the "fainting" to go away quickly so Haley can resume her normal life and get out of the wheelchair and the hospital bed in the living room.
  • For her to be able to follow the special diet and for it to make a big difference.
  • For Dr. H to continue to think about her condition (I understand from his staff that he will continue to think and research long after his patients have left the office).
  • For Haley's pain to decrease.
  • For our family to know how best to love and support Haley through this difficult time.
  • For us to all know God's kindness in a new and clear way.

Thursday, December 11, 2014

A Fun Surprise from Haley and Some Other Sweet Ladies

She said that there would be a surprise for me when I got home. She knew that I was worn out from studying for my final exam and working and taking care of her. And she wanted to encourage me. When I pulled into the driveway as I got home from work on Tuesday evening, I noticed the two small Christmas trees on either side of the front door, all lit up. My first thought was that Larry had decided to get a start on the decorating. (I had made everyone aware that I was feeling stressed about having done nothing to get ready for Christmas, and this small gesture was so appreciated by me, as much for the decorating itself as for what it represented.) When I got inside, though, I saw it. There was a fully decorated live Christmas tree in my living room, lit up in all its glory! As it turned out, Haley had masterminded a plot along with our friends Donna, Rebecca and Kendra, to spend the entire day decorating our house. I immediately burst into tears!  These four had worked all day getting bins down from the garage shelf, unwrapping ornaments, connecting lights and putting various decorations around the house. They did all this as Haley sat and directed them. Even the mantel was decorated!




This past month has been incredibly difficult. As you can imagine, to go from having Haley fully functional, driving, working and titrating off of her pain meds like a champ, to her current state of health is more than discouraging. Even in the past few days, she has continued to go down hill. She is fainting about 20 times a day, sometimes even when she's just sitting in her bed. Today, she fainted and fell out of the bed. She woke with her wheelchair on her and in a ton of pain in her head.








We continue to covet your prayers for perseverance, healing and wisdom for Dr. Henderson. We will travel up to MD on Thursday (of maybe Wednesday night) for a special MRI on Thursday at 8 am and will see Dr. H at 3 pm. I know this will be hard on Haley, as she has little endurance. Please pray for that, too. We are hopeful that Dr. H can once again fix whatever is wrong in her neck. I will keep you all posted. Thanks in advance, all.

Monday, December 1, 2014

Seventeen Days

Haley has had a rough several days. Her fainting has gotten more and more frequent. She had another trip to the ER on Wednesday night (into early Thursday morning) for severe headache and continued fainting. It's so hard for her and so stressful for those of us who are around her when she faints. She is black and blue all over from falling on the hard ground. Can you imagine seeing your child constantly hurting herself and not being able to do anything to prevent it? Larry and I are on eggshells whenever she tries to get up.  My nephew, Michael, who is living with us, has been such a help to us.

We spoke with Dr. Henderson on Thanksgiving day, and he said he wants to see her "in an expedited fashion." I got an email this morning from his scheduler, and her appointment with him is December 18th. Seventeen days away. It seems like a long time. Hopefully it will fly by. Dr. H thinks that it's likely that her neck bones have shifted and that's the reason for the fainting, but he also said that it's more than likely two or three things all related to her Ehlers-Danlos syndrome.

We have a wheelchair in the house again, but it's emotionally hard for Haley to use it much. She says it feels like she's going backward to a very sad place. (I sure understand.) We have talked about putting a bed in the living room again, but she flatly refuses. It's too depressing for her. So, we have to escort her upstairs when it's time to go to bed at night.

We have been in touch with the leadership at our church, and are planning to ask for volunteers (again) to check in on her while we are at work.  Boy, it is so humbling and also such a blessing to be cared for like this. But we absolutely can't let her be alone. It's too risky. If she faints with her collar on, her face usually lands with her nose and mouth pressed against the floor making breathing difficult (or impossible), as the neck brace makes it impossible to turn her head to the left or the right.

Thanks, again for your love, concern and prayers for our girl and for us!

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!!!