Facing Fears

NG is No Good

This afternoon Haley had a chance to face her biggest fear in life and overcome it. First, some background:

 Many of you know that Haley has been sick since she was about 9 years old. When she first got sick, it was with severe abdominal pain. (We now know that this is how EDS starts in many cases.) At the time, we brought her to the pediatric gastroenterologist at the nearest university medical center. After doing a workup, it was decided that she needed surgery. (The need for it was later questioned by other doctors). In order to clean her out before surgery, she was told that she had to drink a one gallon jug of bowel prep. She was also told that if she did not drink it, the nurse would have to put a tube down her nose into her stomach. She tried, but vomited the prep, so we were enlisted to help in the task. I was to get in her bed, she was to lie in my lap, and Larry was told to lay his entire body over her little legs. We followed instructions and then the nurse shoved the tube (called an NG tube) down her nose and into her stomach. It was very traumatic, to say the least. This, plus many other invasive, scary procedures resulted in Haley being diagnosed by a child psychologist with post traumatic stress disorder, or PTSD.

Ever since that time, Haley has said that she would rather die than to ever have and NG tube again. It was the thing she feared more than any other thing.

Back to the present: She has been dealing with a lot of pain (postop) and nausea for the past several days. This got worse on Saturday, and Sunday morning she began to vomit. You can imagine how difficult this was for her to do in a hard collar and with pain in the incisions in the back of her head and her left back rib area, (from the first surgery) and in her abdomen, flank and side from the second surgery. She vomited off and on all day. The gave her medicine for it and for pain, but she kept on vomiting. Eventually Dr. Henderson came in and said those most-feared words--"We need to place an NG tube." You can imagine her response. Her response was also NG- not good. She explained to him that this was her worst fear and that she would rather die than to have another NG tube.  He listened, but explained the need for one.  He said that she was in a cycle of pain meds causing her digestion to slow, which caused the bile that her body produced to stay in the stomach, which caused nausea, which caused vomiting, which increased her pain from straining, which caused the need for more pain meds...and so on.

And so, brave Haley, the heroine, agreed. Dr. H was kind and made little jokes to help her relax, but it was 100% Haley facing her greatest fear. Here is a picture of her with her NG tube. (She's asleep so I didn't ask if I could post this. Let's hope she thinks this one makes her look Bad A, too.)

 

 

After an hour or so, Dr. Henderson said that the nurse could take it out. It did the trick. No more vomiting!

 He also said that he wanted her up walking in the hall. This was her first time using her new walker. She was able to go down the hall and back, but it was really hard for her. This was the longest she had ever walked since her surgery (or since May 22 for that matter) and it took its toll on her. She, once again, showed her bravery and perseverance. Her is a picture of her in the hall with her nurse Harolda.

 

This was a tough day that started our gloomy and dark, just like the weather her at DCH and ended with the sunshine streaming in. Our hopes were lifted and it may be that she will be discharged from the hospital on Tuesday! We will wait and see. My goal was that she would be able to declare her independence before Independence Day. Please pray that it would be so. Thanks, friends.

Some Pictures

"Bad A" Haley

This morning we came to the hospital and Haley had been transferred to a new room (the unit she was on closes for the weekend). Dr. H was there to remove the lower drain (yay) and to change her dressings. She is still in a good bit of pain, but they are giving her meds. (It's incisional pain, and by now she has quite a few incisions.) I read her the blog from this morning and told her that I took her picture in the recovery room but that I didn't post it because I promised her I wouldn't and because no one should have a picture of themselves in recovery posted on the internet. She wanted to see it, and then she said, "you can post that. I think I look kind of Bad A." So here is the picture of "Bad A Haley":

Even in pain, she has her sense of humor. Of course, she's on pain meds, so let's hope she remembers that she told me to post this. Ha Ha.

Here's a pic of her yesterday while she was flat on her back. Poor thing. This makes me sad knowing how much she was/is suffering, but as she improves every day, it will be good to see how far she has come.

I also thought I would post a picture of the flowers sent to her by our church family. They are really lovely and cheered up her very depressing room. Thank you Cov!

Well, I guess that's enough for now. As computer illiterate as I am, this takes me an eternity to find these photos. My kids would be rolling their eyes, but it is what it is!!

A Bump in the Road

More Surgery

On Friday morning while still at the hotel, I got a call from Haley saying that there was a problem and that she might need another procedure. It seems that the pressure of her cerebral spinal fluid (CSF) was too high and that she had also developed a leak in the covering of her spinal cord/brain so that the CSF was leaking. She had two drains still in from her surgery on Wednesday, one in her mid-back from where they took a piece of rib and one in the back of her neck near where he had done the fusion. These drains look like hand grenades and they are squeezed by the nurse and capped to allow for gentle suction which removes any fluid build-up from the incision site. Anyway, the one near her neck was draining straw-colored fluid (and lots of it), which they assumed was CSF. This is not normal or good.

The decision was made to take her back to the operating room and place a shunt that would go from her lumbar spine to her abdomen. Her pressure was too high because Dr. Henderson said that this is common in 30% of people with EDS. He also noted that her pressure was high on Wednesday when he did a spinal tap at the beginning of her surgery (23 for those curious among you-normal is 12).  We had a lot of questions for Dr. H, like, "if she has a leak, why is her pressure high?" And,"why does she have a leak?" And, "what are the risks?" And...you get the idea. Dr. H calmly answered all of our questions, but by the time the decision had been made to operate, Haley had started eating her breakfast. (She didn't know she was going to have surgery--no one did and they brought her a tray.) So, surgery was scheduled for 4 pm.

Dr. Henderson stayed at the hospital doing all the paperwork and ordering all the appropriate pre-op tests, and then he left for the office (about 25 minutes away). Poor Haley had a terrible headache that was worse when she sat up, so she laid flat all day and was on pain meds. This was really discouraging to her (and us) because she had had such a good day the day before with no headache and walking to the bathroom without fainting, etc.

Well there was a big storm in the area on Friday evening, and the traffic was bad on the Beltway (not an unusual occurrence according to the nurses) so Dr. H didn't get back to the hospital as early as he thought and she didn't go to the OR until 5:30. We went and got dinner in the cafeteria per doctor's orders, and then we waited in the waiting room. He thought she would be out by 8:00. By 9:30 I was in full wig-out mode. Besides, the last time we were in that waiting room, we were surrounded by family, which was a great comfort. This time, however, the three large flat screen TVs were blaring but they were all tuned to different stations! I thought I would lose my mind. When I considered standing on a chair to change one or more of them, I glanced around to see that someone was watching each one. Then, to make matters worse, there were a couple of kids who decided to run around the large waiting room chasing each other screaming. At random points, the mothers, who apparently didn't know one another, called out the kids' names, which they totally ignored and which only added to the noise. While these "ferrets on crack" ran and ran, I tried to distract myself with Solitaire on my phone, a large print Readers' Digest, Facebook, and anything else I could think of. I was able to control my tongue (yes, really) and not say anything. Good times!

Mercifully, they departed and we were left alone. Larry did stand on a chair and turn one of the TVs off and we continued to wait. Finally Dr. H came into the room looking a bit sheepish. He said that it went well, but that these shunts are "rather tricky to get just right" and he sort of apologized for the length of time it took. (I must have looked frazzled!)

So, we told him to get some rest (his day was as long as ours had been with a lot more physical and mental energy expended), and he left. And guess what we did next? That's right...we WAITED some more until the recovery room nurse came out and got us. By this time it was 11:00. Dear Haley looked rough around the edges, but was able to speak to us and tell us she was OK. We sat at her bedside in the Recovery Room for a bit and Larry started falling asleep in the chair. It was then that we kissed her goodbye and left for our home away from home.

This morning (Saturday) I mentioned to Larry that this has been like a roller coaster ride. It's been years since I've ridden on one, and I don't plan on doing it any time soon (or ever), but I distinctly remember the type that has a big, steep hill and then on the other side, there's another smaller hill. That's exactly what yesterday felt like. I hope it's smooth and calm from here on out. Actually, I hope she (we) gets off the bloody thing for good!

"They shall walk and not faint"

Best Day Ever, Part II

"But they who wait on the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.
Isaiah 40:31

This morning Dr. Henderson came in to see Haley and he and his PA, Bob, got her on her feet, and SHE DIDN'T FAINT!!!!! I, of course, cried. I have not seen her on her feet for more than two seconds without fainting since May 22nd. Dr. H had her go up on her toes and up on her heels and she walked about 5 feet. Here is a picture of that moment.

This was another huge thing for Haley. No migraine and no fainting. What more could we ask? This surgery was a total success. I looked Dr. Henderson in the eye and said, "You did it!!" He just smiled. (I got the impression that he doesn't like the accolades.)

Another great thing that happened today was that Haley got to meet two other patients who had the same or similar surgery as her. One is a girl named Sarah from Canada who is 19 and they really connected. The other is a woman named Dianne who is a young mom from New Hampshire. They all met in Haley's room and we took a picture. Here they are:

 

 

 

The other nice thing that happened today was that Haley's older sister, Paige came to visit with her friend Betsy. How sweet of them to travel and spend the day with us. Paige was a great help and ministered to her sister so sweetly. This is a picture of Paige feeding Haley pea soup (her fav)

How good God has been to us. It is hard to take it all in and I find that I am processing it slowly. I randomly say to whomever is around, "Can you believe this?" We never dared to hope that this could be the outcome. I think that we had been guarding our hearts from disappointment. How wonderful that we can just savor the goodness of the Lord.

"Haley" means "heroine"

"My migraine isn't there."

Larry and I just got back to the hotel after spending the whole day at the hospital. Haley is hurting from her big surgery, but she was clearly able to tell me "my migraine isn't there." The magnitude of this statement is still not hitting me full force. This kid has had a migraine every day of her life since September 5th 2008. That's 2144 days (according to Larry, the math teacher.) The only time it went away was when she would get a pain shot, and then it only diminished it from a 9 or 10 to a 4 or 5, and about six hours later it was back in all its fury.

She is very sore in her head, but she says it's not deep pain, but post op pain. Also her neck hurts in the back where she has an incision and she has two drains sticking out of her neck and upper back (I think). She has pillows all over her to support her, two IVs, a catheter, foot pumps to prevent blood clots, and, of course her neck brace. She is lying almost flat by doctor's order, so she can't see you unless you're in her line of sight. This afternoon when all the anesthesia meds were wearing off, and before they got her pain meds fully on board, her pain was a 15. (On a 0-10 scale.) But by this evening, she was more settled. I told her to try to relax and breathe slowly and to remember that this is temporary and to be expected. I'm sure that after all the pain she's had, it's hard to believe that pain will go away on its own.

I stood at her bedside stroking her head and reassuring her that it would go away and that she will get stronger every day, when I remembered the meaning of her name. We named her Haley because we liked the name and because her older sister, Paige, was concerned that if the new baby was a girl and she got a "girly" name like Victoria, Paige would always be known as the plain one. We looked in a baby name book for a name that would "match" Paige, and we found a list of similar names that included Haley. When we looked up the meaning, we found that it means "heroine". I thought, "that's a nice meaning, I hope she grows up to be a heroic person." Little did I know at the time how much of a heroine she would need to be.

And so there I stood, at the bedside of my heroine, thinking how proud I am of her, how her suffering has been vindicated, and that she has fought well. Some people may not know that she has been doubted, accused, disbelieved and dismissed. This was as a young child (starting at age 9). How sad that when a person is fighting pain, they also need to fight to be believed and taken seriously. It really makes me sad.

Anyway, as I thought of all of these things, I also thought of the quote at the top of this blog; Haley's favorite quote, about how one day all the bad things will be turned into good things in the day of the Lord (when Jesus comes back). And I thought that in a very small, teeny tiny way, we had seen a bit of that today. This very day, June 26, 2013, the bad became good. Yes, she hurts, and no they haven't tried to stand her on her feet yet (that will happen tomorrow--prayers appreciated that she won't faint!), but there was a very significant turning back of pain for one young woman in a hospital in Maryland. Maybe it's a foreshadowing of that Day to come. Maybe God gives us days like today as a foretaste of that Day to come. If so, there had better be some serious cosmic Kleenex because I cried buckets of tears of joy today. When all of her siblings had left and it was just her dad and me, I cried and cried and cried at the goodness of God, the Great Physician.

This is a picture of Haley in the pre-op holding area almost ready to go to the OR this morning. Her dad is reading her a passage of Scripture before surgery.

She's out of surgery!

Dr H just came out and told us that surgery went well. Her first words to him were, "I'm still alive!"  He said it took a while longer to get her head situated and that she is groggy with some back pain. I forgot to ask if her headache is gone. I sure hope so. It came on Sept 5, 2008 so I would say its time for it to go!  I can't wait to see her but am so relieved to know she's out of OR. God is good to us. Better than we even know. We won't know until later if this has helped her fainting. I so hope it has. Please continue to pray for her and us. All three of our sons are here with Larry and me along with two of our daughters-in-law. Such a comfort to have them along. Scott kept me doing crossword puzzles to keep from crying. Haha. Thanks for your continued support. I'm typing this on my phone b/c we can't get on the hospital's wireless. Will update later.

Pearl Diving

"They who dive in the sea of affliction bring up rare pearls."-Charles Spurgeon

This afternoon Haley had some time with her dad speaking about deep things of faith and hope and life. Haley reads a daily devotional on her phone and she shared the above quote and read the devotional from April 11th to her father and me. (Larry's sitting in the wheelchair because he says it's comfortable. Plus, he can roll right up to the bedside.) In it, the author says,

"I have never heard anyone say, 'The really deep lessons of my life have come through times of ease and comfort.'  But I have heard strong saints say, 'Every significant advance I have ever made in grasping the depths of God's love and growing deep with him has come through suffering."-John Piper.

Haley is continuing to learn these deep lessons of life, most of which I will never learn. Sure, it's painful to see your child suffer, but none of us knows the reality of the suffering that she has endured these last 11 years.

As a mother, you always wonder what your kids will grow up to become. When Haley was about 4, she wanted to become a cowgirl. (Probably not going to happen.) And of course, anyone who knows her and has seen her on stage and heard her voice, knows that she would love to become a Broadway actress. (Could happen, who knows?)  But today, as I listened from the background, I realized that my daughter has become a pearl diver!! Wow. I never saw that coming. (We live in the mountains, after all!)

As you continue to pray with us as the surgery on Wednesday comes closer, pray that God would open our eyes to see the pearls that he leads Haley to find as she dives in this murky, dirty, nasty sea of affliction.

Thanks, friends.

Pails, Nails and Details

Today was a full day for Haley. She enjoyed visiting with some friends and was surprised by her good friend, Elyshia, who arrived with arms full of gifts. She lavished Haley with movies, flowers, snacks, a book, and lots of comfy clothes for the hospital. I said it was like Christmas in June. Haley said it was more than she usually gets at real Christmas. (She's right!)

This is a picture of Haley and Elyshia (Ellie) and all of the presents:

And Haley with one of her gifts, Hunger Games socks:

Later we took Haley out to the deck and washed her hair. We transferred her from the wheelchair to a metal deck chair right outside of the kitchen window so that we could pull the spray nozzle out the window and rinse her hair. We scrubbed her head with our fingernails and washed and conditioned it twice. She said it felt so good. Then we got really creative and decided to give her a bath on the deck! We held up towels and filled up pails and pails of water so she could scrub herself. It was quite an ordeal and it resulted in a big pile of wet towels, but a clean, happy Haley. I wonder what our homeowners association would say if they knew! Ha ha.

While we were helping Haley with her bath, we all noticed that she had a lot of dead skin on her feet and that they looked awful. Haley decided that she wanted to use the gift card she received from her aunts for our local nail salon. She said that she was game for a trip into town, so we hoodwinked her dad into accompanying us. (We needed his brawn.) So off we went to get our nails done. Larry (the saint) waited patiently while we got our nails done. It was such a fun day of pre-hospital pampering. Here she is getting her nails done:

Lastly, Haley has asked me to post about the details of her surgery because people have asked her what she's having done. So, I will try my best to let you know what the plan is (I promise not to get too technical or too gory.)

Dr. Henderson says that her head is not correctly sitting on her spine. When they did imaging studies, he took measurements of certain angles, and they are WAY off. He believes that this is what is causing all of her neurological symptoms (migraines, nausea, vomiting, and passing out). She has a problem with her connective tissue not having enough collagen (Ehlers-Danlos syndrome). This has presumably caused a weakening of the supporting structures in her neck resulting in brainstem compression. So the surgical plan is to fuse her cranium to her first two cervical vertebrae. Dr. H will place screws in the lateral boney"wings" (my word) of the top two vertebrae. This is delicate because if you've ever seen a model of the spine, you know that the top two "wings" are much smaller than all of the other "wings". He said that in EDS patients, these are even smaller and more delicate than in the rest of the population. They are so small, in fact, that he has only one chance to get it right. There is not enough bone for another shot at it. Also, there are two critical arteries that run just behind these wings. If they are damaged or cut, it would mean stroke or death. (So, so scary.)  He will also put a plate at the base of her skull. He will then use x-ray to make sure her head is at the exact correct angle. Then he will take a CT scan and measure all of the angles again. Once they are perfect, he will attach the screws to the plate by two bent rods. He will need to take a piece of her rib for one side of the screws and a cadaver rib for the other side. He will take some bone marrow from her hip and put it with the ribs to encourage bone growth. (Without covering the screws with bone, they are likely to get loose and cause problems.) He will then take cadaver bone chips and her bone marrow and fill in the place between the bars near the plate. This is to strengthen it and make it secure. The surgery is expected to take 5 hours. He has done this surgery over 200 times in the last 20 years. We feel very comfortable with him and have been in touch with scores of his patients via facebook and they sing his praises. Many say he saved their life. So there you have it. Please continue to pray for her and us. I have tried to imagine how it will be to sit in the waiting room for five hours waiting for some word. I really need prayer at 7:30 on Wednesday morning. Thanks, friends.

Humility 101

As we continue to wait for the day of Haley's surgery, I am continually humbled and amazed at how many people are caring for us. I had a little time to run errands to the grocery store yesterday with my daughter-in-law and we ran into several people who told us that they were following Haley's blog and praying hard for her total recovery. This was so kind and I began to realize the magnitude of the reach of social media. She has been put on prayer chains of churches all over the country. All I can say is, WOW! And, we continue to have folks come to the house every day and care for her. Our neighbor, Roger, walks our precious dog, Lucy, several times every day and mows our lawn at least twice a week. Such a blessing.

I have been thinking about how humbling it is to receive. We all feel uncomfortable with it. We think, "I'm not worth their ____________ (time, attention, talent, money, etc.)" or "How can I return their kindness?" or "This is so embarrassing!" "They saw my dirty _________ (bathroom, kitchen floor, oven, laundry room, etc.)" For me, I would much rather be the one doing the giving. It feels more comfortable to me. But we are in a season where we are needy. Very needy. I cannot physically take care of my own daughter. I have an injury to my back and have been in physical therapy since March and I cannot lift at all. I have to have people with her so I can work and shop and go to church. Being in this state can be very isolating, and sometimes we just need to talk with someone. And we have financial needs that go along with this type of condition.  At every turn, God has met our needs and we are humbled. But there is great freedom in this humility. I really have nothing to hide. You can come and clean my toilets or fold our underwear, even the ones with the holes!! It's OK because I know that you are in this with us and that you are loving us with the love of God, and He is glorified in it. (Besides, I bet you have toilets that sometimes need cleaning and underwear that needs folding, even if they don't have holes!!)

So this is where my thoughts have been lately. I am learning to become comfortable (or less uncomfortable) with letting others help. I trust that it is only for a season and that some day soon I can be on the giving side!

Haley is still hanging in there waiting for Wednesday. She had a visit yesterday from a sweet family from our church who have 4 little ones. They brought us dinner and stayed to visit. The kids crawled up in the bed with her. This is a picture of all four in the bed and another one of her holding the baby. So sweet to see her smile.

Hope Delayed

Well we saw Dr. Henderson today and it is confirmed that Haley needs fusion surgery from her skull to her third or fourth cervical vertebra. This is a big, big surgery that is risky but necessary for Haley to regain her normal function. We went to Maryland this morning all prepared to have Haley admitted to the hospital and the surgery performed within a few days. The car was packed and the hotel reservation made for 7 days.

Instead, Dr. Henderson looked at his schedule and his first available surgery time is next Wednesday, the 26th at 7:30. This is great news (it could have been a month away), but it was very disappointing to Haley. She sort of broke down in the office, and the staff felt terrible. The scheduler tried to find someone local to move, but all of his patients in the next several days are from a distance away, so it would be impossible for them to change plans (plane tickets have been purchased, etc.).

So....we wait. We know that God's timing is perfect. And we know without a doubt that she needs this surgery and that there is a 90% chance that it will make her well, which is a pretty strong statistic, but thankfully, we don't put our trust in statistics, but in the hands of the One who made Haley.

Until then, it is more of the same. I am going to try to keep my suitcase packed and live only out of my dresser drawers. (Who knows what crazy outfits I can come up with!) Also, Larry is not going to be able to come to Maryland for the surgery, as he has a weeklong course that is required for him to maintain his teaching certification. This is disappointing, but also under God's perfect plan. Hopefully one or more of Haley's brothers will be able to come so they can lift her when she faints and can lift their momma's spirits during the 5 hours or more that Haley's in the OR.

Please continue to pray for our family. We are so dependent on the prayers of our family and friends, and we love you all for the way you've supported us thus far.

This is a picture of Haley back in the hospital bed in the living room being cheered up by Ryan and Heather's dog, Cosby.

Aslan's On The Move

This evening a group of elders from our church came to pray for Haley before our trip to Maryland tomorrow. What a blessing to have these men come and pray, some with tears, for our sweet daughter.

I have a friend who used to call me and say, "Aslan's on the move", which is a quote from a C.S. Lewis book, The Lion, the Witch and the Wardrobe. Aslan, the Lion, is the Jesus character, and by it, she (and Lewis) meant that God was doing something.

In the last few days, I have thought of this phrase, and it is true for us. We have seen God envelope us in His arms in the form of physical help, financial gifts, emotional support, and much prayer, both seen (as above) and unseen (as many of you have reported).

So when I'm feeling overwhelmed by what lies before us and with what we must do today (and tomorrow, and the next day), I remind myself to open my eyes and see the blessings. My friends, Aslan is indeed on the move!

One Day More!!

Well it's been one month since I've blogged, not because nothing's been happening, but because I'm too tech-challenged to figure out how to do it.

With a lot of help from a friend (Monica) I am back at it. The past month has been a trial for Haley that I could never have imagined. She has been sick for 11 years and this month has been by far the worst. She fainted on May 19th and fell down the entire steep flight of stairs in our home. Larry and I were out at the time and she called us to say she was having severe pain down her spine. In the days to come, her fainting went to 20 times a day. She would faint whenever she yawned. I knew something was terribly wrong. She was admitted to the hospital and stayed there for 8 days. The doctors made contact with Dr. Henderson, and he felt she should been seen as soon as possible by him (our idea of as soon as possible and his were not exactly the same!) We were told that she had a follow-up appointment for 6/19. She was transported home by ambulance and has resided in the living room in a hospital bed ever since. She uses a wheelchair, but is limited in how long she can sit up. She continues to faint, even when she is lying down. When she yawns, I cringe, knowing that she will pass out.

We have had an army of volunteers coming to stay with her. What a blessing!! We 've had meals brought in, our lawn mowed, laundry done, the house cleaned...all so humbling. People who Haley hardly knows have watched videos with her (she's a Monk freak) and our sweet music minister has come on several occasions to lead her heart and voice in worship songs as well as sharing his own compositions to uplift her (and my) heart. These wonderful folks have helped her with her most private care and brought her special treats (Julie's banana bread and fresh raspberries to name a few).We have been in a holding pattern for 20 days and we are very weary. On Wednesday, we will somehow load her into our minivan and travel 2 1/2 hours to see Dr. Henderson (after first stopping to get a CT scan of her neck done). Her brother Ryan will accompany us to help physically and to be an extra set of ears as we hear what Dr. H has to say.

Please pray for us as we are excited and scared. It felt as if the day would never come, and as it has drawn nearer, it seems it's coming too fast. We have no idea what lies ahead. We trust that God will use this to restore her to perfect health. But we also know that this is BIG surgery and that there is still a good bit of pain ahead of her. This poor, strong, wise, brave young woman has endured so much pain that it's hard to imagine that there must be even more for her to go through. But we trust that God has a plan and that it is perfect and will result in His glory. That is our prayer.

Good news with a side of scary (a post from May 16th)

Well, this is my first attempt at blogging. Heaven help us all!! We just got back from our visit to Dr. Fraser Henderson in Chevy Chase, MD. We went to see him so that he could check out Haley to see if she has a chiari malformation. It was an overnight trip that involved a special MRI and a hotel stay complete with "average" Chinese takeout. When we saw Dr. Henderson, we were shocked to learn that there is an abnormality involving Haley's brainstem. It seems that instead of her head tilting like normal heads, hers slides. This is absolutely NOT normal. Also the hole in her skull where her spine attaches (called the Foramen Magnum for all you student-types) is too small (or stenosed). When she moves her head certain ways, he thinks it kinks her brainstem. On the MRI, he showed us that the angles were too sharp to be normal. This could be responsible for her headaches and fainting as well as her vomiting and many of her other symptoms!! Wow. We didn't see that one coming.

We both thought that he would say that she has a messed up neck and tight muscles that contribute to her headaches, but never did we think there was a malformation. He also thinks she has a connective tissue problem like Ehlers Danlos Syndrome.

So for now she is to wear a hard neck collar as much as possible to see if it improves the symptoms.  She is also supposed to see an eye doctor in Maryland and a geneticist, also up there. She needs to have a CT scan of her neck and head and some bloodwork done. After all of that, Dr. Henderson will see her again. He is a neurosurgeon, and he said this is correctable with surgery, but, of course, that has not been scheduled yet. 

So how does it feel to have a possible answer after more than eleven years? Right now we are numb. She called a mentor/friend and told him and he said it well..."Good news with a side of scary."