Haley Is My Hero

Shiny Teeth

Wed, 29 Feb 2012 12:20:00 +0000

When Daddy arrive home yesterday Haley immediately said, "Daddy, I have shiny teeth!" It was a busy day yesterday that started off with a couple of seizures and Diastat doses. Then it was more valium before we headed off for the oral surgeon. After the surgeon, it was a quick drive over to the orthodontist. She was an excellent patient, but then again what would you expect from a "professional" patient. The surgeon cut the gum and exposed to the tooth to put on a bracket and the orthodontist put on the rest of the brackets. An elastic thread was attached to the impacted tooth and then wrapped around the wire. Finally we are going to see the "missing tooth" in a couple of weeks...or months!

As we were getting ready to depart from the orthodontist, Haley remarked, "Mommy, I need a new broom". She has always been a simplistic girl. When she was two Haley had her first extnsive EEG. Afterwards, we headed to Toys "R" Us to compensate for what we thought was a horrible experience. Everything is relative! We went into the wonderland of toys and announced to Haley that she could have ANYTHING. What did our little simplistic girl want? Haley stated, "I want a purple umbrella". After repeated tries to refocus her on something more glitzy and a higher price tag, we left the store with a purple umbrella and an extremely happy toddler. Definitely a lesson in there!

Dravet Mommy Doctor

Mon, 20 Feb 2012 22:10:00 +0000

Prior to Haley's birth, my medical experiences were limited. My family was military and I have only have a handful of memories of going to the doctor. Two of those involved stitches about a decade apart, and beyond severe cases of poison ivy, I rarely went to the doctor. However, with Miss Haley and then her brothers in my life, I am finding I am reluctantly persuing a "Mommy Medical Degree".

Of course it all started with Haley's uneventful birth and successive pediatrician visits that all new moms go through. However, after Haley turned five months we ventured into the field of emergency medicine. It was a baptism by fire, with Haley having her first seizure and every test run, with the exception of a spinal tap (thankfully I asked my pediatrician her "mom's" opinion on that one!) If you have read any of this website you know we became quite experienced in emergency medicine. I am not proud to say, but all three of my children have been in the ER before they turned six months. With the frequent visits, I got very comfortable in the emergency room. I even got so bold that once when I was in the ER with Haley during the Ketogenic Diet years, I responded quite harshly to a doctor. After the attending physician went over "why" were in the ER that night, she said, "you know, there is NOTHING we can do for your daughter...". I immediately responded, "Oh, yes there is, YOU WILL give her something to stop these seizures OR I WILL take her home and eventually overdose her and be right back up here!!" A few moments later that doctor came back in to apologize. She told me, "My nurses said that I was rude to you, but it is just that you know more than we do about this..." So I guess I can say that was the first time my medical prowness was acknowledged.

When Haley was about five and could not attend school because her seizures were so severe and frequent, I would joke that instead of Kindergarten, Haley was "pre-med" and using the "hands on" method to learn about all fields. After all by the time Haley was three she had already visited the Pediatrician, the Neurologist for seizures, the Urologist for frequent UTI's (both boys later received care from the same Urologist), the Otolaryngologist for tubes, the Orthopedist for a broken arm, and she accompanied me to the gynecologist and perinatologist during my pregnancy with the twins. Once the twins were born she did a rotation in neonatology and got to have a quickie visit to the NICU and progressive care nurseries.

Right after Haley turned three, we ventured to Johns Hopkins to study medical diets alternatives to pharmacology in the treatment of seizures. If that was not enough during that year, we also discovered that Haley's ear tubes had worked their way out of her eardrum and lodged themselves in her ear canal. This caused a 30% hole in her left ear and a 60% hole in her right ear. This was quite against the odds, but most everything with Haley thus far in her life has been against the odds. It also indicated much further study into the field of otolaryngology. This included a sleep study, removal of tonsils and adenoids, and eventually tympanoplasties (patching up the eardrum with a skin graft) in both ears at separate times. After each surgery she looked like a wrestler with only one ear guard on. Of course because of this unique situation, we were sent into the field of audiology. During several hearing tests we discovered that if Haley senses that you are the least bit uncomfortable with working with her OR if you can not engage her in an audiology exam she WILL NOT participate. She will either insist on coloring OR continually yank on her earphones and not respond to questions. If those two avoidance techniques do not work, she will try to “free” all the animals out of their plexi-glass cases.

By six Haley was introduced to the world of therapies. Through the public school system, Haley was found to be eligible for Speech therapy, Occupational therapy and Physical therapy. She received these services on a weekly basis in the school or in our home. We also paid for additional therapies outside of school through children's hospitals. We even enrolled Haley into therapeutic horseback riding. I would have to say that was one of our best decisions in the therapy fields. It helped so much to straighten out a curvature in her spine.

If we fast forward to eight, she had received the diagnosis of Dravet after two visits to the Epilepsy Monitoring Unit (EMU) for 48-hour stays. We spent time with the geneticist to discuss her “di-novo” and unique mutation that indicated Dravet syndrome was her diagnosis. She had a visit to the cardiologist because mutations in the sodium channel gene can also affect the heart as well as the brain. This was the year we also decided to revisit the field of orthopedics. Individuals with Dravet syndrome tend to have flat feet to start with and then over time the way they walk becomes a more “crouched gait”. Their feet pronate (turn inwards), the knees come together and their hips shift back. We were beginning to see this in Haley by the time she was eight. The first orthopedist dismissed all of my concerns and I kid you not, he rolled his eyes at me when I explained her high pain tolerance. Needless to say we did not return to his office, but sought out two more opinions before settling in with an orthopedist. I wish I had a video of Haley jumping up and down with three broken bones in her foot to show the first orthopedist. These kids with Dravet have an extreme tolerance to pain. In 2011 Haley did have the surgery on her feet. In this surgery she had cadaver bone implanted in both ankles to create an arch and more stability in her gait.

So here were are at eleven and I am thinking we have pretty much covered most of the medical world, with the exception of gerontology…of course all of this is quickly moving me in that direction! What else could we explore?? So at the beginning of February, Haley decided to enter into the field of Dentistry. She tripped over pillows on the way back to bed after a bathroom visit. Against all odds she hit ONLY one of her front permanent teeth and pushed it completely up into the gum! She also had to get a stitch in her lip. This all propelled me into the study of dentistry.

So Haley once again is now providing a “teaching” experience for all involved. I have learned that if Haley was younger, say eight-ish, then “no worries” the tooth’s root has not completely closed and the root is what drives the tooth down into place, so the tooth will re-erupt. If she was older, say 13-ish, “no worries” she would definitely need to have a root canal. So Haley once again is in the “gray area”. As her dentist says, “There really are not that many studies done on this type of thing. No one voluntarily wants to have their tooth pushed back up into the gum”. Isn’t that odd?? LOL!

So after the initial injury, we played the wait and see game for a week and nothing happened. Then we were directed to the orthodontist by the dentist. The orthodontist who said, “I know what I want to do, but I cannot get a bracket on that tooth, maybe the endodontist can while he performs her root canal.” Then it was time for a game of phone tag. The dentist called the endodontist who did not want to see Haley and perform the root canal until the tooth was down further. Then the dentist called the oral surgeon to find out what he would do and then the dentist called me with the appointment.

Last week we went to the oral surgeon and finally got a game plan. On February 28th, the oral surgeon will cut Haley’s gum and place a bracket with an 18kt gold chain on it (she is going to look good!). After that I will take a “drugged” Haley up the road a couple of blocks to the orthodontist who will put on more brackets and we will finally begin to bring the tooth back down. Thankfully all these guys know each other and are working together! I feel the love! So once this is all in place Haley will have to have a root canal. The worry is that the body will reabsorb the root if it left up there. Who knew? They say that many adults find on an dental x-ray that their tooth suddenly has no root and then need a root canal. It all can be traced back to a trauma from when they were a child. Such insight I am receiving!!

I am really learning way more than I ever thought about the medical field. So in light of all of this, I have created a shirt. I have frequently remarked that I am a “Dravet M.D.”, a Dravet Mommy Doctor. I think most of us with kids with Dravet or any rare syndrome or disease do become the experts in the field. You can check out my Café Press store where I have the Dravet M.D. t-shirts for sale along with other items. All proceeds will go towards Haley’s Research Fund that is held by Dravet.org.

Along with a Dravet M.D., I am quickly learning more than I wanted about Special Ed Law...So I might also have a Dravet J.D. before all of this is through...

http://www.cafepress.com/haleyismyhero3?aid=55879511

Back to "toothless"??

Tue, 07 Feb 2012 01:30:00 +0000

Wednesday morning was a very busy one...a seizure at 3:30 AM, another at 4:45 AM, went to the YMCA at 5:30 AM, ran over six miles, and then the phone call from my husband, Bobby at 6:25AM. Haley had fallen and might need a stitch in her lip. I went directly home and looked at Haley's lip. In lifting up her swollen, bloody lip, I discovered that there was no left front permanent tooth any more. It had either been broken or pushed back up. When I examined her closer, I could see the rough edge of the permanent tooth peeking out about 1mm from the gum. So then it was a "splash" shower, get dressed again and off to the ER. The ER felt she did not need a stitch, but it was nice visiting all the folks who have worked on Haley over the years. We had not been in the ER for at least two years. Then it was off to the dentist...and this was all before 9AM.

So the verdict is that Haley is I must now complete my rotation in dentistry and orthodonics and maybe endodontics. After all for me to be a full fledged "Mommy Doctor", I must investigate these fields, LOL!! The dentist said if Haley was younger, no problem, the tooth will come down on its own. If she was older, no problem, root canal. But no, Haley is in the "gray area". It all depends if the root is closed or not. Since there is not a lot of studies on this kind of thing. As her dentist said, "there aren't any volunteers who want their tooth push back up in to their head". Crazy, I know. So we are all learning here. What I believe is in her future is the pulling of the tooth back into place by an orthodontist and bracing it and a root canal procedure.

Haley through all of this has been completely unphased. She has not missed a beat and remains her happy upbeat self. She looked pitiful with her swollen lip and missing tooth, but she did not care one bit. We hope she continues on this theme.

To add insult to injury on Friday it was her brothers' birthday. She hovered a bit too close to the birthday candles and singed her eye lashes. The girl can't get a break!! Keep her in your prayers! The coming week has dental and orthodontic appointments, can't wait!!!

Eleven years of seizures

Mon, 30 Jan 2012 00:20:00 +0000

January 29th is a day that will forever live on in our lives as the day that things changed. At the time we had no idea. Eleven years ago today my husband and I along with Haley had spent the greater part of the day shopping at Home Depot. We were looking for lighting fixtures for the house we were remodeling and would soon to move into. We got home late in the day and I was preparing dinner and Bobby had Haley lying on his chest wearing her pink Osh Kosh overall with yellow duckies. The ones with the yellow bow on the back and she had on a yellow turtleneck and socks. Funny we can remember it all so clearly.

When I looked at Haley she appeared to be flushed, so got out the ear thermometer and one ear read 96.3 and the other ear 100.3. I thought that was weird. So to the changing table we went to get the rectal thermometer. As I was taking her temperature, her eyes rolled back and she began convulsing. I don't know how i knew, but I knew...she was having a seizure. I immediately gathered up things and we headed off to the ER. Living in a rural area, waiting for an ambulance means waiting for the volunteers to go to the ambulance and then try to locate you. It was much, much quicker to take her on our own. The rest of the evening was tests, blood draws, x-rays, etc. We were fortunate to have our pediatrician already in the ER when we arrived to give us words of wisdom from a doctors point of view and even more important from a mom's point of view. We left that night with a diagnosis of "febrile seizures" due to an ear infection. I slept that night with Haley on my chest listening to lullabies by "Twin Sisters" recordings.

So here we are eleven years later. It took six and half years to get the diagnosis of Dravet syndrome. I look back over the years and think in some ways we were blessed to not know what Haley's condition was during the younger years. We held out hope that one day, if we could stop the illnesses and reduce the seizures and get of the medications, then she would be "normal". Back in those days, I did not want a label. I wanted you to see my daughter. I thought that "those" children in the Special Ed class were NOT her peers. I tried in vain to help her learn and to move forward. So then again, maybe it would have been easier had we known her true condition at an early age. I know that we would have not tried some medications and then tried them again. She would not have been so over medicated when she was five. We would have persued therapies earlier. Now I find myself wanting the labels in every color and size. I adore "those" children in her special education class who give me hugs every morning and greet me as "mom".

What does it do to think what I should have done or could have done?? I love the phrase that Dr. Wayne Dyer uses in his book, "The Power of Intention", "don't 'should of 'all over yourself"! After all, if you should of then you would of, right? We will move forward from this day and continue on our Dravet journey along side of many other brave moms and dads. This definitely was not the life I imagined for myself and I would not sign up for it. However, I am so richly blessed by experiencing it.

2011~A Year in Review

Fri, 20 Jan 2012 13:30:00 +0000

One of my New Year’s resolutions was to keep Haley’s website more current. It was probably one of my resolutions from last year as well. I was sitting down to recap the year and then the thought was to show it in pictures. I don’t know about you, but 2011 flew by. I am not sure why or if it is true what they say, the older you get the faster time flies. Last year was a blur in some places and dragged along in others.

As you can see in the video we had some major events happen in Haley’s life. The addition of Stiripentol to her medications has made a huge difference in seizure control. It is not a complete “fix”. I am not sure Dravet has a complete fix at this point. What we have noticed with Stiripentol is that Haley has less seizures, fewer seizures and more “spontaneous” language. My best example of the increase in language has been Haley actually saying where she wants to go. For her eleven years she pretty much has been loaded in the car with little information and off we go. It is not unusual for Haley not to question where she is going. She is extremely laid back in that way. Once and awhile she will ask where she is going. But this summer she actually requested, or demanded, to go someplace. We were driving to IKEA to meet up with other Dravet families while visiting my parents. From the back seat Haley proclaims, “I waaaaant too goooo too the stooorrrree”. I replied, “Haley, we are going to the store”. To which she responded, “Noooooo, I waaaant to goo to the store with the ‘red dot’”. Of course we all know that as Target! I was so excited, if I could I would have turned the car around and rewarded her, but we had people to see! But we DID stop by the “store with the red dot” later that night.

Another funny example happened right before we went on this venture. I was trying to comb out Haley’s very curly hair. Apparently I was bothering Haley by doing this and I might have hit a knot or two or four in the process. Haley looked up at me with her huge brown eyes and said in perfect “tween-speak”, “Mommy, you drive me nuts!!!” I nearly fell over in laughter! Fast forward a couple of months to Hurricane Irene. We had gone back to my parents for “safety”. The first night there Haley had the hiccups. You know the ones that are so deep seated they hurt. She had hiccupped for a good hour before bed. As I was putting her to bed I told her, “Haley you are driving me crazy”. To which she responded, “No Mommy, I don’t drive you crazy, I drive you nuts…..and you drive me nuts too!” She has a great sense of humor.

The other major event was the surgery on her feet. Haley had cadaver bones inserted in her ankles in an attempt to bring her foot into a more neutral position. Prior to the surgery her feet were so pronated (collapsed inward). The rolling of the foot inward was causing her knees to come together and her hips to be shifted back. This all together caused a “crouched” gait when walking. One of her feet was worse than the other and that is the way she came out of surgery. One foot looks “nicer” than the other. When the casts first came off, I don’t know why I thought she was going to be able to walk perfectly. Initially I was disheartened when she could barely walk at all. But then rationale kicked in. She had been non-ambulatory for the first three weeks and then in walking casts for the second three weeks. And even though she had the walking casts, she was pretty much sedentary for the entire six weeks.. So it made perfect sense she needed to relearn to walk. Fortunately a local physical therapy group had hired a pediatric PT and Haley did not have to venture far for services. We are so pleased with her new PT site and the results we are seeing in Haley.

A funny story that happened during the non-ambulatory phase…I was attending a Zumba class with some regularity last Spring and Summer. One day another mom came up to me after class to ask had I changed my fitness program, she thought I looked more muscular in my upper body. I thought and said, “No, I still come to the Y to lift weights and do cardio, but no, I have not changed anything.” It was not until I was walking to my car that it dawned on me, that all the lifting and carrying of Haley’s 65 lbs. plus casts had an impact on me!

I think one thing I can say our family has learned this year is to laugh. In years past things have been tense to say the least in our house. The stress of a disabled child coupled with twins and our own business made things just a little crazy. For reasons, that I can’t exactly explain there is a lightness in our household. It could be that the twins are older and less needy or that Haley’s seizures are better controlled. Perhaps it is because we have a wonderful caregiver for Haley right now. We would be lost without Caroline. We love having someone work with Haley that can assimilate into our crazy family. Or we may attribute to the fact that after 10 years of Dravet we have settled into the diagnosis and the acceptance that Haley will always be with us. Whatever the reason, we do see the blessings that this horrible condition has brought to us. I think we are able to do this because of our faith in God and the belief that there is a higher purpose for Haley’s condition.

Haley rides a bike!

Sat, 19 Mar 2011 19:34:00 +0000

Haley's school physical therapist has given Haley this bike "on loan" to try for awhile. Yesterday was her first time out. She did so good, with the exception of heading for drainage ditches on occasion. But her face shows her happiness beaming, ear to ear! I apologize for the poor quality of this video!!

Gracie and her "friend" Susie in the back ground!!

It's HERE!!!

Sat, 19 Mar 2011 00:44:00 +0000

After years of talking about the elusive drug, Stiripentol (Diacomit), we finally have it in our possession!! It has been a long and involved process to secure the drug and have it fully funded for Haley. We pray that it will give Haley some relief from the almost daily generalized tonic clonics that she has been experiencing lately.

We first heard of Stiripentol shortly after Haley received her diagnosis of Dravet syndrome four years ago. We saw it on the IDEA League Family Forums. It was a drug that produced in France and available in Europe, but not the USA. At the time it had just had a huge price increase in the cost of the drug. There were many families that were able to import this non-FDA approved drug. Some had miraculous effects and others did not have great success. We were shown the what, how, why and where to get the drug IF our doctor would write the prescription.

Back in 2008, we did not think it was going to be possible to get the drug for Haley and we thought it also was more beneficial to the kids who were suffering from "Status Epilepticus", a seizure lasting 30 minutes or longer or clustering of seizures with no consciousness in between. Since Haley had not had an episode like that since 2005, we did not push the issue to get the drug. However, time went by and we tried and failed new drugs and the prescriptions she was on were not giving her much of a break seizure-wise. Lately the longest we go without a seizure is 2 or 3 days.

In 2010 we decided we wanted to try the "magic" combination that has been known to work for children with Dravet syndrome. We heard it at the IDEA League 2008 Family and Medical Conference and then again in the 2010 conference, Stiripentol, Frisium (Clobazam) and either Depakote or Topamax was the combination that works for some Dravet kids. So we began our quest to get these non-FDA approved drugs.

Just an aside, both drugs are available in the USA because they have orphan status. An orphan drug is a drug that has shown to help a rare disesase or condition. Since these drugs serve a small population, there is not a huge return on investment for a pharmaceutical firm to put out all of the money for clinical trials. Basically it all comes down to the almighty dollar. So sad.... However, Frisium is about to be approved in the fourth quarter of this year. It will be rebranded as "Onfi" and available in the USA. The clinical trials for the drug were focused on individuals with Lennox Gastaut syndrome a much larger population than Dravet syndrome. We are so happy that the drug will be approved by the end of the year. Stiripentol is another story. So far the ONLY group Stiripentol has been beneficial for is Dravet syndrome. Haley's doctor was helping to advise the IDEA League with getting the drug started with the FDA approval process said that the data supplied by the European studies would be "laughable" to our FDA's strict procedures. Unless we can find another group that would benefit from the use of this drug, it will not be approved any time soon. It is just not cost effective.

In 2010 we were able to finally get our doctor to write a prescription for Frisium. We were going to pay for it initially out of pocket, an expense of nearly $300 a month. Fortunately with the help of the IDEA League and other parents who have traveled down this road, we were able to get the drug approved by our primary insurance company. Surprisingly, it required very little effort. I guess when you send the insurance company a 20-page packet with the documentation on how the drug has helped other Dravet children and various approval letters from their own counterparts in other states, they have little to deny! In April of 2010 we started weaning Haley from Klonopin, a drug that is similar to Frisium, but has more adverse side effects, to Frisium. The wean from Klonopin was supposed to be very difficult and we did it painfully slow. I am happy to say, we had very little adverse effects and Haley came through the drug "exchange" a more vibrant little lady. With the addition of Frisium, we saw more spontaneous language and more personality. We were so happy and ready now to tackle Stiripentol.

In the summer of 2010, I contacted Haley's old neurologist who is now a state senator too! Lucky us!! He agreed to help us with our endeavor to get the drug approved through Virginia Medicaid. Stiripentol out of pocket is very costly. A month's supply could cost well over $1000. We just do not have the money to put out in advance. Her old doctor is a true Southern gentleman and a wonderful advocate. He sent the letter in the the agency in July and rumors were heard that Stiripentol was covered in Virginia by August. We even heard from the pharmacy in NYC that they had become an "approved provider" for Virginia. It all sounded so promising!! Sooooo we waited and waited to hear an official confirmation....and it never came. Summer slipped into Fall and right before Thanksgiving the pharmacy called and said, "all we are waiting for is a coding form to know how to bill". I was seriously doing a happy dance, jumping up and down...so excited!! Then right before Christmas, the pharmacy called to say, "I don't know what happened, Virginia is now saying 'NO'". Immediate deflation... Shortly after the holidays we learned that the reason for the "No" was because it WAS NO A FDA APPROVED DRUG! Well, duh!! That is why we wrote them in the first place!!!

In 2011 we started again. I contacted her old neurologist, and he made some calls. We hear once again from the pharmacy in NYC and they say, "We spoke to someone from VA and they are very apologetic, the just realized it was an orphan drug". So we were back in the holding pattern waiting once again for the process and coding for billing. Long story short, on Thursday, I called the pharmacy around 2:30 PM again to ask IF they had received what they needed from Virginia. The answer was no. So I called Virginia and actually spoke to a person and not an answering machine. The ball started rolling and it quickly picked up speed, by 3:30-4:00 PM, we had new prescriptions, payment was guaranteed and next-day air was promised!! Woo hoo!!!

So on Friday afternoon, I walked into my house to find a small box about 8x8x8 was sitting on my table. I literally picked it up and hugged it and then ripped into it!! We are so excited to finally receive this medication and we pray that it will provide relief for Haley and our family. This has been a long, tiring journey. But every day we are encouraged by new friendships, gestures of compassion and the others that have traveled this road before us.

Lancaster Middle School students are "Heroes" for Haley

Sat, 19 Mar 2011 00:30:00 +0000

The Lancaster School SCA presented Haley with a check for $800.00 in her honor. The SCA hosted a "Social" for their classmates with the Haley Smith Fund as the charity of choice for this year. Mrs. Tara Booth stated that in her nineteen years of holding a fund raiser of this sort, this is the largest amount they have ever raised".

They presented the check to Haley during their "Morning announcements/TV news". Of course, I cried when they presented the check. I am continually humbled and honored to be living in such a compassionate community. During the week before the social, I would be taking Haley to her classroom and I could hear the kids whispering, "that's the girl who we are raising money for". Along with the whispers came more acknowledgement of Haley with smiles and waves. After she was presented with the check on "TV", one young man saw her later and said, "Congratualtions". The following day a young lady who we do not know waved to her and said, "Hi, Haley!" More tears from me!

A few weeks ago in our local paper there was a letter to the editor that said they had not seen more ruder kids than this particular middle school. In some regards I did agree with the writer of the editorial, some kids can be rude. But I think we have to be careful to typecast and label these children. What they did for Haley was far from rude. Child learn what they live. I appreciate those who made this very generous donation to Haley's fund. One mom told me how she had given her nine-year old daughter $10 for the social and her daughter took $12 of her own money as well. When her daughter got home she said, "Mom,...I'm broke!...but do you know what?,....it was for a good cause..." Oh so touching...and more tears.

Timing of Diagnosis

Fri, 11 Mar 2011 00:03:00 +0000

Everyone's journey is different with this syndrome. We traveled a long road full of hope that Haley would out grow her seizures and be a "normal" child. "If only we could get the right mix of medicines then the seizures would be less,...then for sure she would be 'normal'", is what we thought. That is what I can remember from the good days when Haley was young and we had no official diagnosis.

I know some of my family members were upset that the diagnosis for Haley took so long, but recently I heard of someone's daughter being diagnosed who was 43 years old....wow, she is as old as my younger sister. I can't imagine how that mom has made it so long without knowing, yet knowing their child was different. I know for us the time not knowing made me stronger, wiser, and helped me grow in my faith. For at times all I had was my faith. Not knowing made it easier to decide to have ONE more child, yet God in his infinite wisdom, gave us twins instead. I am not sure if we would have had more children, if we had known what life was going to be like with Dravet syndrome. Ignorance was bliss in this department.

I know a mom whose child was diagnosed really young, under a year. The doctor that diagnosed her child, then told the mom that her baby would not live to see five. Can you imagine living those years with that prognosis? I am happy to say that the child defied the doctors prognosis and is almost eight. But having that diagnosis early has its blessings too. You know what drugs to avoid. You know in advance that you need to get your child involved in multiple therapies to improve their quality of life. It is a bitter pill to swallow so young, but you at least have a path to follow.

So which is better? Is there really an answer? I know God gives us what we can handle when we can handle it. Like I said before our family was much better knowing later or we might not have siblings for Haley. I am who I am because of what we went through. I learned doctors do not know everything, that they are "just practicing medicine". I learned a lot about myself and others. Some people can be very uncaring and cold...and others can be surprisly compassionate.

I feel very blessed at this point in my life. It is hard to convey that to someone who is newly diagnosed. When I hear someone has been diagnosed after a time of searching, there is mixed emotion. I am very happy that they got their diagnosis, but at the same time I am bummed that it is THIS diagnosis. However, we are all in this together and we can band together to help one another. We all become part of an extended family that understand each other's "normal".

I saw a quote at one of my favorite restaurants, Food for Thought in Williamsburg, VA. I wish I would have written it down. It went something like this, "Life is not fair, it just is...it is how we react to it that makes all the difference". I really like that.

Blessed by friends

Wed, 09 Mar 2011 21:22:00 +0000

I am constantly humbled by the members of our community that want to reach out and help Haley. Today a friend shared a website that they created to help us reach our goal of $30,000 for Haley's research goal. The website is called "Miracles Happen" and the link is www.cafepress.com/jesusfulmiracles

Please check out the link and see all the goodies that you can purchase to Help Haley's cause!

Thank you Tom and Alison for your dedication to Haley and our family. We love you guys!!!