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IN THE NEWS!!!

Posted by haleyismyhero on February 24, 2014 at 10:10 AM Comments comments (0)



Our fight for medical cannabis made the local news out of Norfolk, VA.  The title was not exactly what we would have wanted, and the visuals seem to elicit a "Cheech and Chong" stereotype...but news is news and it started a conversation.  I did write the reporter and said I wish they emphasized that Haley would NOT smoke this and it would NOT get her high.  I sent along this photo of Charlotte's Web, an oil that is high in CBD (Cannabadoil) and low in THC (the psychoacitve component).  Apparently they did do a follow up story and clarified that and showed the photo.  

http://wtkr.com/2014/02/12/could-a-weed-bill-puff-puff-pass-in-virginia/

13th Anniversary

Posted by haleyismyhero on January 29, 2014 at 2:35 PM Comments comments (0)

Haley decided to start her "anniversary" off with a BANG!  Fourteen seizures this morning.  She had extra medication before bed and two magnet swipes on her VNS to help her get through the night.  Starting at almost 1:00AM she began to seize.  The seizures lasted between 30 seconds to 3 minutes.  Bobby gave her Diastat (20mg) after she experienced five seizures around 5:00AM. She had five more seizures and at 6:30AM, I had to give her a intramuscular injection of Midazolam.  She still had four more seizrues before waking up.  She has not gotten out of bed yet, she is just napping on and off.

Dravet syndrome to me is the 'schizophrenia' of epilepsy.  It is forever mutating in how it presents itself, changing seizure types regularly.  Then the medications that used help become ineffective and perhaps the ones that did not work before might now work.  I often wonder if it would be best to put all her meds on a lazy susan and spin for the daily dose of pharmaceuticals.  I often worry about the damage that the long term use of benzodiazepams are on her body.  We know that Depakote use is hard on her liver and she has elevated enzymes...but nothing abnormal for someone on Depakote. 

This all brings me to the new fight we are beginning.  It started last week with a trip into Richmond to join a lobbying group  for Medical Cannabis headed by Safe Access Virginia.  To be honest it actually happened the day before the election last November....Haley and I "accidentally" ran into the democratic candidates for Governor, Lt. Governor and Attorney General on our way home from a neurology appointment.  We pulled in to a strip mall with a Five Guys for lunch and looked up and saw U.S. Senator Mark Warner and Terry McAuliffe go into a store front.  Haley and I followed, hoping to see Dr. Northam, Lt. Governor candidate and Haley's first neurologist.  We basically "crashed" a pep rally.  Afterwards we got to speak to Dr. Northam.  I went to talk to him about Lancaster County's schools and HE brought up the subject of Medical Cannabis saying, "Lisa, you know about Medical Marijuana for kids like Haley...(head nod on my part)...I'm going to push for it".  I then inqured if his cell phone was the same...


On Monday, January 20, 2013, I with other members of Safe Access Virginia,  headed to the General Assembly Building to meet with our delegates and senators.  We also were there to oppose a bill brought forth by Delegate Robert Marshall.  The Honorable Delegate Marshall wanted to remove the part of Viriginia Code that allows for a doctor to write a prescription for medical marijuana for glaucoma and cancer.  You may say, Virginia has a law that permits that??  Then why are you fighting for it??  It is there, but it is flawed and ineffective.  You see, the prescription pad that the doctor would write the prescription on is regulated by the DEA and federal law prohibits the use of medical marijuana.  We need new legislation that would allow a doctor with a long standing relationship with his patient make a "recommendation" for medical cannabis and we also need to expand upon the conditions it  would be available for.  We did get to meet with Dr. Northam and many members of the House and Senate.  

We are now trying to educate the legislature on what Medical Cannibis can be.  For Haley it would have little to no THC, the psychoactive component.  She would not be able to "get high" or have to smoke it.  It would be in a capsule or 'gel' or be edible.  Because it does not give the "high" it has little chance to become addictive or abused recreationally.  How does it work?  They really do not know, but that is the same response we get when we ask how some of her anti-seizure medications work.  Cannabis is a neuroprotectant and anti-inflammatory.  It was widely used in medications up until 1937.  We will continue to fight and hopefully the Commonwealth of Virginia will follow the lead of other states that are looking into legislation to give kids like Haley a fighting chance at life!

2013 Was a BLUR....of Seizures

Posted by haleyismyhero on January 29, 2014 at 8:35 AM Comments comments (0)

Here I am on the 13th anniversary of Haley's first seizure and looking back not only over the 13 years, but the last year. 2013 by far was the worst seizure control we have experienced with Haley. The difficulties were further compounded by difficulties with the VNS and then a host of school issues.

The year started off with four hospitalizations in two months. All hospitalizations required an ambulance ride from our local hospital to VCU/MCV in Richmond. Haley loved that, even though she was “unconscious” on the rides… The first, third and fourth were due to clusters of seizures that would not stop. We would administer our “rescue drugs” (Diastat, Lorazepam, or extra daily meds) and she would still seize. The second hospitalization was due to flu and pneumonia and she had the shot!! Amazingly with the flu and pneumonia and high fever she never had a visible seizure!


During these hospitalizations we tried adding Verapmil to her cocktail of drugs, but after a couple of months of taking it we saw no benefit. It was after the third hospitalization that we were given a new “rescue” drug to try, Midazolam or Versed. Many Dravet families had been using this as an alternative to Diastat. The majority of them gave it to their children intranasally. Dr. Pellock has been consistent on one issue of medication and that is to “know that the amount given was given”. He feels that if we were to give the medication intranasally we could not be sure that all the medication was administered. We were prescribed to give it intramuscularly. So I learned how to do that on an orange…

The next round of seizures we tried our Midazolam and then went immediately to the ER. We wanted to make sure she did not experience any negative side effects of the drug which could include respiratory distress. We arrived and within 45 minutes she had another seizure, the ER doctor administered 4mg Ativan. Thirty minutes later she had another and another 4mg of Ativan. The ambulance was called and then one more seizure and one more dose of Ativan before we left for VCU/MCV. Upon arriving at MCV she had more seizures. That was the beginning that set the tone for the rest of the year.


We felt the love of many in March when we celebrated “Purple Day for Epilepsy”. We were touched by the many, many friends and family that wore purple to support Haley. We are so blessed by our community! We continued to raise Epilepsy Awareness in April at the Annual National Walk for Epilepsy.

In April we decided to take the next step in seizure control. We scheduled surgery for a Vagus Nerve Stimulator (VNS). We had the surgery on May 29, 2013 and all went well. We felt we had improved seizure control. We went to our follow-up with the surgeon, Dr. Tye (he is an amazing surgeon and very caring!) and everything looked good…he said see you in about three years.

 However, we were back in his office in early July. Haley’s incisions looked red and inflamed and the one under her arm had not healed all the way. We initially thought it was an allergic reaction to the sutures. This was the timeframe for them to be dissolving internally. Haley was put on an anti-biotic and we thought that was that. Then two weeks later the incisions ruptured open. We went in for an office appointment and ended up staying the night and having surgery the first thing in the morning. It was quite a surprise for all of us. We had house guests at home, British Soccer/Football Coaches, but fortunately for me they had planned on cooking for us that night. The surgery we well, they washed her out and they stitched her up with non-dissolvable stitches. We removed the stitches in the appropriate time period. Things looked good. We thought it was all behind us…and they ruptured again. We went back in the hospital and the plastic surgeon tried to use Silver to heal it all. We went home with “silver pads” on the wounds, but they would not heal. So on August 8, 2013 we went back into surgery to clean the wounds out again. Unfortunately when they opened Haley up they found so much infection they had to rip (carefully) the device and all the leads completely out. It was suggested she might be allergic to the silicone on the device. We prayed they would find another reason. After two days in the PICU it was found out to be a staph infection and we went home on hard core antibiotics.


In August we had another wonderful expression of community love. We hosted the First Annual (hopefully) Haley’s Beach Birthday Bash at Willaby’s Restaurant. The turnout was amazing despite the weather..which was gray, rainy and cold. We had three bands play: James Justin, Spreading Joy and Legacy. It truly was an amazing event. My nieces all came to help support Haley and we raised over $7000 for the Dravet Syndrome Foundation. The money went to buy durable medical products for families that have to deal with Dravet syndrome. We hope to do it again, as many people responded so positive to the entire event.

In the meantime, we had found out that Lancaster County Schools were only going to have two nurses for three schools. In my opinion and the opinion of Haley’s medical team, Haley could not attend school without a full time nurse. I let the Director of Special Education know and nothing was done. I spoke at the School Board meeting and nothing was done. I requested a Homebound form to be signed by her neurologist and submitted it to the school before the start of school. I informed her program director of the issue and we planned to meet the third week of school, since the first week was too busy for her and the second week our family was on vacation. Long story short, legal teams had to get involved, followed by a formal complaint to the VA DOE. Presently as I write this, I am waiting for a resolution to the whole thing. In the school’s response to my complaint they make me to be the one at fault for not explicitly asking for accommodations to be made in her IEP and a few other allegations that are not factually true. It is hard to send Haley back into that environment after seeing the “true colors” of those involved in her education. I know no one wants to be blamed for something that has happened, but open discussion of the whole situation would have prevented the escalation of the problem. Stay tuned…

The month of September was a very difficult month despite the school issues. Haley had over 100 seizures in the month. It was decided right away that the VNS needed to go back in. On October 3, 2013 it was re-implanted. We saw immediate results. Four days without seizures!! We cheered, but that was the only “long” (it’s all relative) break we got from the seizures.

She ended the year with a total of 750 seizures that is more than double what she did in 2012. I partially blame puberty…I won’t discuss that here… I tried to figure out by looking at her seizure calendar how many days she had “seizure free”. I could only count 157 days where nothing was recorded. I do know there are days where I forgot to record data, so it might be fewer. All I know I am glad 2013 is behind us…on to 2014!!

Despite all Haley goes through, she is amazingly strong. Her spirit is so resilient and I learn so much from her. She has shown me what passion for a cause is. I will continue to fight for her and others like her. Whether it is fighting for other children receiving Special Education services or other families dealing with Dravet syndrome or other with intractable seizure disorders, I will persevere as Haley has taught me…after all she is MY hero!

 

VNS Surgery

Posted by haleyismyhero on June 16, 2013 at 4:00 PM Comments comments (0)

Although we have known about the Vagus Nerve Stimulator since Haley was about five-years-old, we delayed trying it.  Partly because our neurologist is considered the "pharmacological guru of pediatric epilepsy" and partly because we always looked at it as a "last resort or last line of defense".  The decision to go forward with the decision was particularly hard for Haley's dad.  I believe because he viewed it as the "last option" for Haley.  And quite honestly, he is right.  There is nothing new in the works on the horizon for those with Dravet syndrome (However, medical marijuana is gaining in popularity, but not accepted widely).  As the protector of the family, Bobby kept hope that there would be something coming down the pike. 

 

This year has been a particularly hard year for Haley.  Haley was hospitalized four times in January and February, three times for clusters of seizures and once for pneumonia and the flu.  She did get the flu shot, but it was our understanding even with the shot you had a 60% chance of contracting the flu virus.  For twelve years we escaped it!!  The clusters of seizures took mega amounts of drugs to slow down.  Once we were transported to VCU Medical Center after she had been given 2 x 20 mg Diazepam and 5 mg Midazolam at home, plus 12 mg of Ativan at the emergency room of our local hospital.  That combination would put several adults on their behinds!  During one ICU stay we spoke with Dr. Gary Tye about the VNS.  It was where I wanted to go immediately, like that day!!  However, we ended up trying Verapamil for a short while.  There were no "remarkable" changes with Verapamil on board and she stayed on it for three months. 

 

In late April we had an appointment with Haley's neurologist.  We went over what options were left for Haley to try.  She was having over 80 seizures a month by this point.  It was a pleasant visit and right before we left I asked our doctor, "About the VNS...If you were her dad when would you think about it???"  His response was very brief and with a slight smile he said, "I would have already had it".  Lesson learned a doctor's medical opinion is not always their parental opinion, it is nice to have both!!

 

Needless to say, talking Daddy into the surgery was easier with the doctor on board.  I was amazed how quickly they got Haley in for surgery.  I think it was two weeks after I made the initial call.  Haley did wonderfully during surgery and absolutely loved being in the hospital.  She had two incisions made, one in her neck for the "lead" or wire and then one near her armpit in the axillary region for the "generator".  The device was not turned on immediately because she had some extra trauma to her neck during the procedure. 

The device was turned on June 3rd.  Another funny insurance issue that makes you shake your head.  As our neurologist was about the activate the device, a knock was heard at the door.  One of the neuro-team assistants was there and she asked, "Is Haley a candidate for surgery??  I have the insurance company on the phone and before they will permit the device to be turned on, they need that question answered."  I was just dumbfounded.  The insurance company approved the device to be implanted, but did not foresee that it would be turned on???  Fortunately that matter was taken care of quickly and she was activated.  So far so good. 

 

We are now in a wait and see mode.  The device is operating at a low level.  We do notice an increase in energy level and less napping during the day.  She has been very "industrious" which has made Mom a little more stressed.  Having a nearly 5-foot tall "toddler" is a little challenging!!

Thank you Obamacare!

Posted by haleyismyhero on May 7, 2013 at 7:55 AM Comments comments (0)

Thank you Obamacare! The "Affordable Healthcare Act" has now made seeing Haley's Pediatric Neurologist/Epileptologist harder to get an appointment, more expensive, AND less convenient. After 25 years of using a satellite office in the Child Development Resource Center in Williamsburg, Haley's doctor will no longer be able to see patients closer to their homes or allow patients easier to access his very busy schedule. Why??? Because it is NOT a medical center...there are not enough nurses on staff...Now I have to drive to Richmond (which is not really a big deal). Pay for parking and pray they do not damage my vehicle (which was done one of the times we used their valet parking~valet parking is a must in order to get Haley safely in the building in a timely fashion), and wait FIVE months to be seen when the doctor said he would like to see her in 3-4 months!!


All that echos in my head is what the attending neurologist said on one of Haley's hospitalizations...the chronically ill will feel the brunt of Obamacare the most. His son has Juvenile Diabetes and he shared the story that his son's has an insulin pump and in the past the "regulator" was no separate charge.  Now he is being charged for the regulator, saying it was always "complimentary" in the past.  I am not familiar with a regulator on an insulin pump, but on an oxygen tank it is integral to dispensing the appropriate amount of oxygen to Haley.  I am guessing it has a similar relation.  How is that "complimentary" and seen as a bonus, is something that they now have to pay for additional for?  It was then the nuerologist said we are the ones that will feel the pain.


I don't think that all who voted for him thought that this would affect us this way. I had someone ask me if I was happy with Obamacare when it first passed, they really did not ask, they just said, I bet your happy with... I said "No, because if we were back when Haley first was starting this journey of uncontrolled seizure, we would have NEVER been able to see the five neurologists before we got an answer to her issue. We would have been stopped after one and said, "She has intractable epilepsy, get over it!" Her neurologist's hands are tied now...it so sad, he really would like to reach out and service an area that has no pediatric neurological care...so sad.  The number of pediatric neurologist is rare, a pediatric epileptologist should be on the "endangered species list".  Here is a man who is willing to serve the underserved and now he is told he cannot in the fashion he has done in the last 25 years!


We are personally watching our private insurance sky rocket.  Since I am unable to work with the uncertainity of Haley's health and now because I have taken on homeschooling my twin boys, my husband is the sole bread winner as a self-employed builder.  We pay out of pocket on an individually held policy that has been very good to us.  But how do we cover the escalating cost of our healthcare?  Just like the other large companies, the costs will be passed onto the consumer. Get ready to see everything jump in price!  How can the small business survive?


Fortuantely Haley is also covered by a Disability waiver in addition to her private insurance, and that helps us cover the costs of her medical care.  Prior to the waiver, we were hitting our drug cap ($5000) every June which caused us to pay out of pocket for all her medicines.  I'll never forget when I went to the pharmacy to pick up four syringes of Diastat (rectal valium), the rescue drug that kept her out of the emergency room.  At the time it was not unusual for us to use 10-12 of them a month.  At that time the four 10mg syringes cost over $770!!  It has since gone up. The cost of the medicine inside??  EIGHT CENTS!!!  What needs reform???  Shouldn't we look at the pharmaceutical companies.  Now the government is talking about caps of the what they will pay for disabilities.  What will we do to cover our costs??  Especially if Haley has another year like this last one, being hospitalized four times in two months!  The ARC posted the following in their "Capitol Insider" newletter/email:

"The plan calls for placing four separate capped spending amounts on each of four major groups: the aged, people who are blind and people with disabilities, children, and adults. The number of individuals in a group would be multiplied by the cap amount for that group resulting in the amount of federal dollars the state would receive for each person in that group. The cap for each group would be based on what a state currently spends on that group. Annual increases to the per capita caps would be based on “a realistic exogenous and appropriate growth factor for each state.” States that currently spend more on each person would be less than increases to states that currently spend less on each person until spending were “normalized” across states. If state spending exceeded the caps, there would be no additional federal dollars."

Notice they are going to multiply the number of individuals in a group...well, my daughter has a rare disease!!!  There will be less money allocated to help those with rare syndromes!!  


It is only just beginning, I have heard other stories from other Dravet families where medications may not be covered any more, waiting to call in two months in advance for an appointment and if there are no slots, you have to call back the next month, and not being able to see their practioner anymore.  Our pediatrician stated that many in the medical field will probably retire early which truly will be a shame for the pediatric epilepsy crowd.  With this scenario, does it encourage people to persue a career in the medical field.  Goes to show you that some ideas might look good on paper, but in reality they do not work. However, in the Obamacare situation...I would like to know who truly read it!!!

Shiny Teeth

Posted by haleyismyhero on February 29, 2012 at 7:20 AM Comments comments (1)

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

Posted by haleyismyhero on February 20, 2012 at 5:10 PM Comments comments (0)

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"??

Posted by haleyismyhero on February 6, 2012 at 8:30 PM Comments comments (0)

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

Posted by haleyismyhero on January 29, 2012 at 7:20 PM Comments comments (1)

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

Posted by Haley's mom on January 20, 2012 at 8:30 AM Comments comments (0)

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.

 



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