Hope For Amanda

Living on Faith, Hope & Love

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April 2011

What an incredible year we've had with Mandy Moo!  She is learning to write her first name, ride a bike and is also a very proud Girl Scout!  Amanda's fine motor skills are improving as she is learning to write her first and last name.  She knows all the letters in the alphabet and has a few favorite numbers:  0, 1, and 10.  

 

During last fall, we attended the bi-annual Idea League Dravet Conference in Conneticut.  What an awesome experience,  we met more than 30 families with children less than a year old to a 22 year old.   It was so wonderful to see the older children functioning well, most still able to walk and talk.

 

During the last night of the conference, we had a dinner and celebrated our children by having them walk on stage,  saying their name and age in front of more than 100 people.  A lot of the children had one of their brave siblings help but I am proud to say that Amanda is one of the few children that was able to do it on her own.  It was one of the proudest moments of our life…I still get teary eyed thinking about the inspiring evening with all the families.

 

 

 

 

 

 

 

 

   

 

 October 2009

We just spent a fabulous weekend at Camp Courageous in Kentucky, their moto is "we prescribe fun".   We enjoyed the camp with 17 other Dravet families.  We had a weekend of crafts, boating, fishing, bowling, dancing and much more!   Amanda loved the fact that she could pick out her own bed in the room; she picked the bed with a Winnie the Pooh blanket...as we like to say "it was a BIG deal" : )  She also loved the fun dance music after each meal, every time she would say "it's another party!!" with her bright eyes and big grin. 

 

 

 

 


August 2009  

We're having a fabulous summer with Amanda!  I love this picture...this is the Illinois version of surfing : )  We started the summer with an adventure to Canada; we stayed in Ottawa & Montreal.   Montreal was so much fun, it reminded us of Paris.  Amanda greeted everyone with a "bonjour" and a bashful smile...it was priceless!

This is the first summer that Amanda's really spent time outside.  Her cooling vest is such a blessing; we were able to spend 2 hours at the zoo when it was 80 degrees!  

 

                                                                                                                                                                                                                                                                                                                                                          

June 2009    

Our angel is 6 years old!  We celebrated her birthday with sugar free pudding, she LOVED it!!

We’ve been wondering how much the Atkins Diet has been helping her seizures since her pattern changed last May.   In February, we tried increased her carbs from 35 to 45 a day.  Within 5 days of the change, she started having head drops.   Now we know the diet definitely is helping and she’s going to be our Atkins girl for quite some time!

 We went to Little Rock, AK and Oklahoma City for Spring Break.   We stayed at the Peabody Hotel in Little Rock so Amanda could watch the parade of ducks…it was so darn cute!!   After the Peabody, we drove to Oklahoma City to stay with Aunt Kristin and Uncle Bruce.   Amanda loved seeing her family and playing with their dog Bas.  I’m not sure who had more fun, Amanda or Bas. 

Amanda still loves the color ORANGE!  We bought her an orange stethoscope for her birthday; let’s just say she enjoys playing Doctor Amanda.

 

 

 

 


 

 

 

 

 

Jan 22nd, 09

Amanda had a FABULOUS Christmas!  This is the first year that we left out cookies, milk and chocolate for Santa and the reindeer.  Amanda only asked for 1 thing from Santa...an orange Gabba Gabba.    Thanks Santa!

 

 

 

 

Amanda had so much fun playing in the snow at Grandma & Grandpa's house!  If you ask her about it...she'll tell you her favorite part was "eating snow" : )

Amanda is doing FABULOUS!!  The morning is definitely Amanda’s best time of the day; she always has a sparkle in her eye, just like her Daddy!  Amanda has been attending the 3 hour morning portion of the Early Childhood program.  Amanda’s 1:1 nurses are just incredible; they are both so great with her.  They are fully transitioned into the school and I’ve been able to leave the school grounds for the last month.  Amanda is so proud and tells everyone “I go to school all by myself”.  

It was recently discovered that Amanda has chronic benign neutropenia. Her white blood cells and neutrophils have been below the normal levels for the last 18 months, if not longer. Her immune system is compromised so we need to be very careful when she gets sick; if she has a temperature of 100.5, we need to take her to the ER immediately.    They will check her levels to ensure her body is able to fight the infection, if not she’ll need to be admitted. 

 

Amanda had strep throat in December which included many visits to the doctor.  We had many labs done over a 2 week period and her platelets were consistently low (80’s).  Amanda has been on a very high dose of Depakote since April 08 and we’ve always wondered if that’s why her seizure pattern changed so drastically in May/June.  Unfortunately, depakote is known to deplete platelets and her bruising was unbearable so we decided to decrease her level at the end of December.   WOW....our angel is starting to come ALIVE!!  The small drug change has made a SIGNIFICANT change in her alertness, speech and energy level.   Thankfully, we have not seen any change in seizure activity. 

 

Nov 12th, 2008

 

 

 

We had a fabulous planes, trains and automobile trip to Germany visiting aunt Kristin and uncle Bruce!  Amanda is a GREAT traveler!!!  We didn't have to use Diastat during the entire trip : )  The pictures are from the tri-country park (Germany, Belgium and Netherlands), Mandy watching the Packer game with Dad and Aunt Kristin and one GIGANTIC windmill!!

 

 

 

Oct 31st 

 

Boo from Mandy Moo!  Oh how lucky to find a witch costume with an orange skirt (her favorite color!!!)  She loved going from house to house and picking up "treats".    She was really shaky for the first hour but we realized it was from PURE excitement!  When Jason asked what her favorite part of Halloween was she said "Handing out Candy".  On Saturday, we traded in all of her candy for a special treat from Mom and Dad....the brand new Laurie Berkner CD.   We've been listening to the CD every day in preparation to see Laurie Berkner in concert in December.  I have to tell you, Laurie Berkner is a "Big Deal" in our house...seeing her in concert will be like going to see Mickey Mouse at Disney World.  We had backstage passes to see her at the 2007 concert but that was during the time Amanda was hospitalized for almost 3 weeks. (sepsis)  I'm going to e-mail her with hopes we can make special arrangements for this concert.  

 

The two nurses, Julie and Jodi, started as her 1:1 aid at the school.  They are both wonderful!  We are going to start the transition period of slowly working my way out of the classroom with hopes of Mandy going to school "all by herself" in a couple of months!  Hooray for Mandy and ME!!!!!

 

We are super excited to travel all the way to Germany to visit Aunt Kristin and Uncle Bruce in November!  Of course we're a little nervous about the trip but this is the best Amanda has ever done in her life so we're taking advantage of it!!

 

 

 

 

 

 

 

 

 

   

Oct 15th

My very generous sister came to help out for a couple of days this week...it was WONDERFUL spending time with her.  Mandy had a great time with her aunt...she even let her try on Bella's (their dog) Halloween costume a couple of times during the visit.  It was a tough discussion but Amanda is going to stick to her original costume idea and will not be Bella's twin ....a Hot Dog.

 

 

 

 

 

 

 

 

 

 

Oct 13th

                                                                                                                                                                                                                                                                                                                            

We have lots of good news to share with you!  The drug changes that we made in August took effect and she’s back to her normal seizure pattern.  She has myoclonics that only occur during a sleep cycle (naps and nighttime).   Her complex partial seizures are now controlled and she is only having eye blinks and absence seizures during her wake hours.  She continues to have a clonic seizure 1-2 times per week.  Amanda is doing FABULOUS!!!  We let her play in adjoining rooms and aren’t checking on her every second…she is loving the freedom : ).

 

Amanda loves going to school!  We’ve been able to attend class every day for 3 hours each morning.  My little independent girl (yes, you can call her a mini-me) has said on many occasions “I go to school all by myself”.  Her request is about to happen…the school has hired 2 nurses to alternate for her 1:1 aid and they are going to start next week.   Hip Hip Hooray : )   I want to share a cute Mandy story…she was making an owl during an art project and the instructor told the kids to put a nose on the owl.  Amanda looked at me and said “Mom, it’s a beak”.  I honestly have never heard her say beak before and was completely AMAZED!  She is such a different child without all the seizure activity but she is showing lots of personality with a little attitude (I think she gets it from her Dad...he he). 

 

Mom's Brag Time:  She can do patterns with 2 objects.  She continues to know A, X and O and 50% of the time she recognizes B, T and W...I honestly don't understand why some recognizes specific letters over others??  She LOVES doing puzzles!  She is starting to use the mouse when working on the computer....we are AMAZED!  I was working with her a couple of weeks ago and was about to explain the click/drag and she started to doing it without the explanation.  Of course, since both of her parents have a background in computers, why are we so surprised?!!? 

 

 

 

 


 

 

August 24th

Fall is coming!!  It was the perfect morning for Amanda (aka Dora) to be outside and she noticed that some of the leaves were falling.  She was more than willing to get out the red rake and help move some leaves around : )   Just in case you're curious what the blue tape is on her ankle, it is called Kinesio tape.  It is the same tape that you may have seen some of the athletes use in the Summer Olympics.  Amanda's physical therapist tapes her once a week to help stabilize and support her left leg/ankle muscle.  You can notice an immediate difference in the way Amanda walks after the tape is applied.  We use the Kinesio tape and pediatric orthotic inserts to give her additional support for walking. 

We have a very busy week!  Amanda has a meet/greet with her new teacher.  We're so excited to start the year at a new school with many of her friends from last year.  This week we also have her 23 hr V-EEG, we're hoping it goes well!

 

 

 

August 18th

 

Amanda relaxing on Big ol' Jake during one of her weekly physical therapy sessions.  She spends the 1st 1/2 hour riding Jake and the 2nd 1/2 hour with her therapist, Amanda.

 

Hmmmm….what’s that song “ch ch changes”?  The word for our summer is definitely change; Amanda’s seizure pattern is completely different now than it has ever been in the past.   She went from having 100’s of seizures during the daytime to having 100’s of seizures during her naps and nighttime sleep (nocturnal seizures).   She also started having complex partial seizure (non responsive, dazed & confused) again this summer which hasn’t happened in about year.   She used to have head drops when she would get too hot and now she has complex partial seizures; there’s pros/cons to each type but this seizure type is much safer because she isn’t falling down or hitting her head.   

 

On a very positive note, she hasn’t had a “statue” seizure in a couple of months and continues to average a clonic seizure every 5-7 days.  The good news is that her convulsive seizures are always under 2 minutes and continues to breathe through each one.   Her temperature threshold is much better this summer; we have been able to keep our house at 70-72 degree’s HOORAY!!!   She continues to use the cooling vest when she’s physically active (www.coolsport.net) or if it’s warmer than the mid 70’s outside. 

 

Her nocturnal seizures are quite interesting (stressful is the more appropriate word).  We watch Amanda on a video camera during her naps and she has 100’s of seizures during the 1st hour of sleep.  We’re not quite sure if they are myoclonics or isolated jerks that sometimes build up into a clonic seizure.  A couple of days ago she had at least 2 clonics within 3 hours of each with 100’s of small seizures in between the large ones.   My maternal instinct is that she is having a lot more clonic seizures than what I’m capturing on our itty bitty baby monitor.    We have been slowly increasing her drugs with hopes it will help decrease the nocturnal seizures but we haven’t noticed any change this month.  We are scheduled for a 23 hour EEG next week to find out exactly what’s happening during her sleep. 

 

Sleep is so critical for Amanda!   I think she is having disruption to her sleep from some of her meds being too high, I just feel like we’re in a vicious cycle.   Tired child=increased seizures and the more seizures you have naturally the more tired you will be, the more tired you will be, the more seizure you will have, etc.  It’s CRAZY!!    As I have been watching her over the last couple of weeks, there seems to be some type of pattern where she will be ok for 1 day and than it all starts again.  We’re really hoping the EEG provides some answers and our doctors will have a couple of different treatment options.

 

We continue to work on building her independence…her famous quote “I do it myself”.  We have taken advantage of our summer break from school during the month of August and have been aggressive with therapies.  We’ve been doing 4 therapies a week, including physical, speech and occupational (fine motor, sensory integration).  She’s very delayed in all area’s;  it’s becoming more and more apparent that we need to really focus on fine motor activities such as writing, buttoning, snapping, dressing herself.    We never had the opportunity to work on these activities before because they were so difficult for Amanda and it increased her myoclonics and head drops within seconds of starting to color or use scissors. 

 

We are still amazed with this new “”Amanda” because her quality of life is much better without fighting the 100’s of myoclonics and head drops throughout the day.    We went to Costco yesterday and I let her WALK with me…it was incredible!!  Believe me; you can’t walk with a child when she’s having a head drop every couple of minutes…it doesn’t work for either one of you.  This summer I’ve been thinking about all the small things that we are thankful for and this is one of them…going for a short walk with your child : )  I don’t want to get too emotional on you but it really is the small things in life!

 

Mom's Brag time....Amanda’s been doing a great job getting dressed all by herself and snapping her shorts : )   She's starting to recognize the letter's A, X and O. 

June 15

Amanda has been doing so well since Memorial Day weekend!  Her daily myoclonic and head drop seizures have disappeared..it's just incredible.  We think the control is from a combination of the recent increase in drugs (depakote & clobazam) and being on the modified Atkins diet.  Unfortunately she's having more major convulsive (statue and clonic) seizures than her norm but quite honestly, we're just enjoying this time.  Amanda has NEVER any control with her myoclonic or head drop seizures so this is a first!    As I've told everyone I know....life is good  : )    

June 4th

Happy 5th Birthday to our beautiful daughter, Amanda.  We have so much to be thankful for today because she is doing FABULOUS!  This is the first time that her seizures have been under control since she was 10 months old!  We’ve been increasing two of her medications over the last couple of months and have finally found the right dosage.  During the last 11 days, she is having minimal seizures, less than 20 myoclonic/head drop and absence seizures a day.

We’ve had a very difficult time this school year because of Amanda’s seizure frequency and severity.  The majority of the days (99.9%), we would need to leave early so Amanda could go home and take a nap.    During the last 11 days, she has been able to stay the ENTIRE session!    Amanda’s temperature threshold also appears to be adjusting because we’ve been able to play outside during warmer temperatures (low 70’s).

 

Amanda is on 3 medications plus the modified Atkins diet and we continue to use Diastat 6-8 times per month.  She is averaging one major (convulsive or ‘statue’) seizure per month.  We’ve also started to notice she is breathing when she has a major seizure compared to last fall when she stopped breathing for a couple of minutes during each episode.

 

Yes, it's time for Mom to brag a little bit about Mandy : )   Over the last 6 months, she has learned how to feed herself and is COMPLETELY potty trained!  In December, every morsel was spoon fed to her because of the ketogenic diet and TODAY she can eat hot dogs, mayonnaise (yes, she STILL wants mayo!!) and yogurt all by herself.    Go Mandy!  Go Mandy!  I can't wait to see what you do next month!

 

 

 

 

April 1st

Amanda had a 2 month stretch between convulsive seizures…hooray!  We’ve also decreased our usage of Diastat from once every 2-3 days to once every week!!  It's a HUGE difference for our family.  She continues to have 100's of myoclonic/head drops a day but they aren't so severe to require the use of Diastat.  She loves being on the Atkins diet and hasn't said no to any new food that we've offered to her.  She's lost quite a bit of weight since January (6 pounds) but looks very healthy.  We're trying to use this 'good period' to work on learning the letters in her name, coloring, counting, etc.   She recently learned how to jump and practices whenever she has a chance; we love to call her kanga(roo) and rabbit!  Jumping is a skill that we've worked on for years!!  I'm so excited that she has gained enough strength to lift both feet off the ground.   We've also noticed that she's falling a lot less in the last couple of months, another sign that she is gaining strength.   

 

Since she's doing so much better, we're trying to adjust our lifestyle and stop living like hermits : )   I took her on a shopping trip to Target this morning and actually let her walk with me!  She loved being able to look around and walk like a big girl.  It tired her out because she was yawning during our short drive home and than took a nice nap. 

 

 

Feb 23rd

God works in mysterious ways....  Amanda's had a very tough winter so we decided to take a spontaneous trip to Disney before she starts to lose some of her functionality.  Less than two weeks before leaving for Florida, our angel starts doing better!  It's a true blessing. 

As you can see, we went to Magic Kingdom where Magical Dreams Come True.  We spent 2 days at Magic Kingdom and had a special order for the weather...50 degree's and cloudy.  It was PERFECT for Amanda.  The day before we went to Disney, it was 83 and sunny (unbearable for Amanda) and the day we left Orlando it was in the upper 70's.....  Do you believe in the power of prayer!?!??!  We do!

 

 

 

 

 

 

 

 

 

                                                                                                                                                              

     Feb 20th:  Amanda's First Chocalate Cupcake!

Amanda and I made chocalate cupcakes last week.  She's such a good helper!  I figured out the carbs and made her 1/3 cupcake...she loved it!

 

 

 

 

 

 

 

Friday, February 15th            I first need to explain this adorable picture of our daughter....  

We’ve been on the modified Atkins diet for 2 months and Amanda is loving the fact that she can eat lots and lots of cheese!  Since we’re counting carbs, she can have approximately ½ cup of cottage cheese for a meal with a veggie.  Last week, I put her cottage cheese in a bowl and went up to our office to check e-mail.   I came back to check on her 5 minutes later and this is what I found…Amanda not only ate the bowl I put out for her but she helped herself to the refrigerator and opened a brand new large container of cottage cheese. She ate half of the large container in less than 5 minutes!!  Does the girl look like she’s in heaven or what!?!?

We are so excited; Amanda is having a really good week (less than 100 seizures per day)!  We haven’t had to give her Diastat (emergency drug used to stop her seizures) in 7 DAYS!!!!  She hasn’t done this well since mid-November!  We’ve had a very long winter with many illnesses (infected lymph node, strep throat and the croup) spanning the majority of December and January.  

 

 

Sunday, Dec 9th

Unfortunately,  Amanda's seizure activity returned back to "normal" but we had 2 very good weeks (we enjoyed every minute of it!!!).  We had a Video EEG during this 2 week period and she did incredibly well during it.  The staff was amazed at the difference in Amanda and how well she was walking/talking compared to the last EEG in Nov 2006.    During this good time, we were able to leave her alone in a room and just listen to her talk/sing to herself.   We were blessed to have this 2 week period come during Thanksgiving so her grandparents were able to enjoy Amanda  'at her best'.  It was truly a gift and we look forward to seeing her do so well again.

After being on the ketogenic diet for 3 years, we've decided to stop and try the modified Atkins Diet.  We believe the ketogenic diet helped control the major convulsive seizures (tonic clonics (aka grand mals) and statue) but within the last 6 months, she has started to have them more often (average 2-3 per month).   There are many benefits to changing to the new diet; we no longer need to weigh her food by the gram and she has unrestricted calories.  We started the diet last Thursday and it was liberating to give her an entire cheese stick for a snack without any mayonnaise or heavy whipping cream.   Now we can also work on Amanda feeding herself because she won't need every morsel of food to maintain the 3:1 ratio of fat.  We are so very excited for Amanda (and us)!!!

We're also working on finding the right dose of topamax.  We're going to continue to increase her dosage with hopes of it controlling her myoclonics and head drops.  She continues to have many myoclonics and head drops every hour.  As she is tired, hungry, hot or stressed, she has multiple clusters per day that limits her speech and ability to be stable on her feet.   

On a much more positive note.....we had an appointment with the Kidney specialist last week because Amanda's blood pressure has been elevated since October.  The appointment went well and her pressure was down a couple of points from the previous visit.  We're going to have an ultrasound on her heart at the end of the month to ensure it isn't working too hard and is enlarged.  If it is enlarged, we'll need to consider putting her on blood pressure meds.  Amanda does so well during the appointments as long as there are stickers and Band-Aids involved : ) We had a very fun family weekend of finding a Christmas tree at a tree farm and decorating it.  

 

Sunday, Nov 18th

We've finally found a drug combination that is working for Amanda!!!  Since last Monday, she is having less than 100 myoclonics and head drop seizures per day.  It's amazing to see her doing so well.  We've noticed a speech progression and expansion in her attention span since last week.  She's been playing with her kitchen toys for 20-30 minutes at a time. 

During the last three weeks, we've made a couple of changes to her drug regimen.  We weaned Amanda off of Zarontin and started Topamax.

 

 

October 31st  Minnie Mouse (aka Mandy)

 

Amanda loved Halloween this year!  I'm not quite sure which she enjoyed more,  answering the door bell or trick or treating with our neighbors.    She observed while I handed out candy to our first treaters than she asked if she could help.  Of course I said yes : )   It was so cute; she picked up handfuls of candy and stuffed them underneath her armpits.  Than she grabbed on to many more with her hands.  I guess she was very excited to give away some of the treats.

Before we left for our trick or treat adventure, I stopped by a few of our neighbors to drop off special non-food treats for Amanda because she's on the ketogenic diet.  Amanda loves music so this year some of her treats included a train whistle (thanks to Jas), triangle and egg shakers.