Wednesday, December 29, 2010

A year of memories, part 3

July:
finally enough hair for bows

snugglebug with Daddy


August:
 
Imagination Mover Reagan Sass

I'm cute and I know it

Get that camera out of here!






A year of memories, part 2

March:
Visiting MawMaw & PawPaw in the "swamp"
Texas bluebonnets
First visit to Rett specialists, mouthing begins and we used a sock and a pool float :)

May:
absolute silliness

summer fun!

June:
Big girl, sitting unassisted







Tuesday, December 28, 2010

A year of memories, part 1

I wanted to share a few of my favorite pictures and memories from 2010, sort of a way to focus on the happy times so that we can end 2010 on an upswing!

January:
Reagan excited to find out she's a big sister

Have you ever seen a baby perfect the pout within minutes of being born?  Lauren's a natural!

Feeding herself green beans

Sweet love

February:
Already a great big sister

An Imagination Movers birthday party for Reagan and cousin Evie


March:
Lauren learning to smile







Monday, December 27, 2010

Hasta la vista 2010

Today marks the beginning of the last week in 2010 and I have to be honest that I am so excited for this year to be over.  It has been a year of such extreme highs and lows, often in the same day.  I have never experienced anything quite like 2010.  The first two weeks we were anxious for both the news of Reagan's bloodwork for Rett Syndrome and our second born baby girl.  As luck would have it, both of those things would come within 24 hours of each other and be the start of a year where I did not know whether to cry with overwhelming sadness that my oldest daughter has Rett Syndrome or laugh with delight over our new bundle of joy.

Throughout the 350 days that were left in 2010 I learned to cope as best as I could.  I cried when I  needed to, laughed as much as I could, and relied on my friends and family to give me the strength and courage to face each day.  Speaking of friends, I have made some wonderful new friends that I have no doubt will be part of my life forever.  I have also lost touch with some good friends and reconnected with some old friends.  I have witnessed first hand the compassion and caring as loved ones, friends and strangers gave generously to the numerous Rett Syndrome fundraisers.  I have had the luck of having great therapists for Reagan that first entered our house with little to no familiarity with Rett  Syndrome but quickly learned from Reagan and other sources to become her biggest advocates as well as dear friends.

I have watched as Reagan slowly lost skills such as using her hands in a functional way so that she can no longer feed herself while her baby sister sits in a high chair next to her and masters the pincher grasp to put small morsels of food in her own mouth.  Again, just a mix of emotions.  I have held my girls tight as the news of yet another child with Rett Syndrome has passed away.  I have asked for a miracle so that no other family has to endure the pain of hearing the diagnosis or bear the thought of losing their baby too early.

I am not foolish enough to believe that 2011 will not be a year of ups and downs.  I know it is all just part of life.  But, I am hoping for a year of less pain and more laughs.  One that brings a balanced level of both acceptance and perseverance in coping with Rett Syndrome.  Let the countdown for the New Year begin!

Sunday, December 26, 2010

Ready for Santa

There are no words for this adorable picture of my girls in their matching footed Christmas pajamas!

Thursday, December 23, 2010

Quick update

We have good news to report from our visit to Rett Specialists....there is NO news!  There is nothing major to report, which I find to be great.  The neurologist was pleased with Reagan's eye contact, interaction, and energy level.  He was less than pleased by her efforts to lick everything in sight, including him.  But, thankfully all of his clients are Rett patients so he understands that it's just part of the deal.  We still are not experiencing any seizures, breath holding or anxiety so there were no new medications to add.  He was also happy with her height (75-90th percentile) and weight (25-50th percentile) growth!  But, her GI Dr was not as impressed.  She was glad to see that Reagan had gained 2 pounds but as expected, she wants to see more weight gain.  The new goal is 1/2 pound every month and a request to return in 3 months for a check-up.  We also changed up some of her GI medicine and are hoping to start decreasing her reflux medicine after the 3 month visit.

We continued our travels on to Louisiana to spend several days with my family for an early Christmas celebration.  It was great to see my parents and extended family and both girls got spoiled rotten, in a good way of course!  Reagan got a new toddler recliner from MawMaw and PawPaw and absolutely LOVES it (thanks to Ms. Abby for sharing the idea!).  She goes non-stop if she is standing and slides out of all the chairs that we put her in so that she can have a rest.  This recliner is perfect because she doesn't slide out of it and it is her own little place to relax while she watches her favorite tv show.

We are looking forward to relaxing over the next several days and spending a lot of quality time with each other with no traveling.  We hope all of you have a great holiday!
No matter how much we sit her in the recliner straight, she prefers to lay across it, using the armrest as a pillow...silly girl!

Tuesday, December 14, 2010

East bound to Houston

This week we'll be making our semi-annual trip to the Blue Bird Rett Clinic in Houston to visit Reagan's Rett Specialists (Neurologist and Gastrointestinal Physician).  Our last trip to these specialist was in April and it was also our first visit, haven only been new to Rett Syndrome for 3 months.  I have learned so much about Rett Syndrome since that visit, from both our experiences and the advice and wisdom of my wonderful Rett family.  I am really looking forward to talking with these specialists once again and hopefully hearing some first hand information about our CURE!

The only part of the visit that I am not looking forward to as much would be the weight check part.  I don't know one Rett family that does not struggle with getting their child to gain weight, no matter the severity in which they suffer with Rett.  It is such a dreadful conversation to have with the Doctor, talks of optional feeding measurements such as a feeding tube.  I know that I want to do everything possible to prevent Reagan from needing to go this route, yet everyone that has had the procedure done for their child has only one regret, not doing it sooner.  So, it sounds like my decision is not logical at all, but completely emotional.

Reagan has gained 2 pounds since April, which seems close to the 3 pounds requested so I am hoping the Doctor will be somewhat satisfied.  I am happy enough with her weight gain especially knowing now that she had mono for the past few months and one of the symptoms is a decrease in appetite...just great!  But trust me, the slow weight gain is not because of our lack of trying.  I have tried to take some of the guilt off of my shoulders for her not eating, thanks to her Nutritionist's advice.  I can not force her to eat.  I can only provide the opportunities and best foods and the choice is hers.  So, I will do my best to take the possibly scrutiny of her weight in stride!

Friday, December 10, 2010

It's been eventful

It started off a couple of weeks ago with Reagan's first optometrist appointment.  Her left eye started crossing in more frequently and I had put off the inevitable long enough.  I'll add this visit to my top least favorite doctor visits because having to hold your daughter down so she can have eye drops to dilate her eyes for the exam is not a lot of fun...poor Reagan.  Survey says, Reagan is farsighted and needs glasses.  I'll post pictures below of how stinkin' cute she is with her new pink spectacles.

We followed that up with a visit to her Pediatrician.  She has been lethargic and exhausted almost all.the.time for the past couple of months.  I called her Rett neurologist about 6 weeks ago and they ruled out any Rett related causes but mentioned that she doesn't seem to be taking in enough fluids so we should visit her Pediatrician to see about dehydration.  We did and that was crossed off the list and we thought she was just going through a growth spurt.  Fast forward to last week and I am more concerned because the lethargy is not going away and I can't believe that this is normal for an almost 3 year old to be too tired to do anything.  So, back to the Pediatrician's office and 5 days later the blood work confirms Reagan has (or had) mono!  She is on the other side of it and is not contagious, but the lethargy will continue (for weeks or possibly months) as her little body tries to recover.  The only thing we can do is provide her with plenty of fluids and rest.

We also received a trial communication device with eye gaze (ECO2) from PRC last week to test out and confirm that this talker is as great as we think...but that's a separate post!

And lastly, this week Reagan had her first dentist appointment.  This is probably the appointment that I was dreading the most because I thought it would be a bad experience with the dentist forcing her to keep her mouth open while they examined and cleaned her teeth.  I am glad that I was wrong, it was the BEST visit to a Pediatric Doctor ever, and we've seen our fair share of Pediatric Doctors!  As luck would have it, I came across the name of a Special needs dentist who recently started seeing patients at the Dell Children's Medical Center...so thankful for Google and the recent article our local station did on Dr. Lisa Jacob.  Dr. Jacob was so kind and gentle that Reagan was calm enough to gladly show her teeth!  It was awesome, no screaming or crying, just smiles and a Tinkerbell sticker at the end!  And as a special treat for being such a brave girl, she got a vanilla milkshake on the way home, oh wait, that's part of her regular diet to get her to gain some weight.  Oh well, she still enjoyed it!

She was not very enthusiastic about wearing her glasses and even less enthused with me taking her picture, so this is the best I have for now:


Tuesday, December 7, 2010

Enough already

Today the Rett families are mourning the loss of another child who lost their battle to this monster.  Sweet little Aidan was only 3 years old.  This is the second Rett child lost in the last couple of weeks and our hearts are all very heavy and sad today.

I got the news of the first loss the weekend after Thanksgiving and I have been holding my breath ever since.  I have only been part of the Rett community since Reagan's diagnosis in January but it seems to me that the passings always happen in clusters.  I was hoping this time would be different.  The news has stopped me in my tracks, made me hold my little ones longer.  It puts that doubt in my mind again about Reagan's health, questioning how long we have before this horrific disorder causes major complications.  My heart goes out to both of these families.

Thursday, December 2, 2010

Ho Ho Ho!

Today's adventure was clearly for my amusement since I am almost certain that neither one of my daughter's could care less about seeing Santa.  But, I am completely convinced that their memories from this age will be mostly from their pictures that I have neatly arranged in their photo albums, creating a story for them of their little lives.

They will see the pictures of them sitting on Santa's lap and they won't remember how I panicked when I realized that Reagan's new Christmas dress was about 3 inches too short.  Or the patience that it took to spend another 10 minutes putting a new dress on her limp and uncooperative body.  They won't remember how anxiously Mommy paced around while we waited in line (thankfully only for 15 minutes!), fearful that this will all blow up in her face.  They won't remember how I gritted my teeth as I felt the woman behind me try not to continuously glance at my 2 1/2 year old daughter who would randomly scream sounds that someone her age wouldn't typically make.  Or the way that my voice quivered when I tried to explain to Santa that my daughter has a neurological disorder called Rett Syndrome and she can't respond to his question about what she wants from Santa this year.  Or how kind he was to try to reassure me, telling me that his 10 year old grandson is autistic.  Nope, all they will remember is what they see from these pictures.  Two precious little girls dressed up to see Santa, and that's all that matters.

Although neither are smiling, I consider it a great victory that there was no crying or screaming!






Tuesday, November 30, 2010

Black Friday

We didn't do any shopping on the day after Thanksgiving.  Instead we went to Elgin Tree Farm for our tradition of cutting down our Christmas tree.  The girls were both in good spirits and we were all full of holiday cheer.  We walked around searching for the perfect tree, sipped hot chocolate, and looked at the animals in the petting zoo area.  Reagan even found enough energy to walk around a little bit to admire our tree before we cut it down.

Ready for Christmas tree shopping!

happy with our tree choice

content

even gave away kisses

with Mommy

Yep, Lauren was there too, promise!


she loves to swing!






Sunday, November 28, 2010

Poem

I have seen this poem circulated a few times among my online Rett community and it touches my heart every single time.  It was written by Kathy Hunter, Rett Mom and founder of what is now IRSA and is now IRSF (International Rett Syndrome Foundation).


           Before I was a special parent.
           I thought RETT SYNDROME was something you got from
           Watching too many re-runs of Gone with The Wind
           That is, after you recovered from Scarlett Fever
           Before I was a special parent.
           PT meant part-time
           OT meant overtime
           BRACES were something you wore on your teeth.
           And a WIDE GAIT was attached to my fence

           Before I was a special parent.
           I actually had a savings account
           I didn't know that I should have invested heavily
           In Scott paper towels, Attends, Velcro and Applesauce

           Before I was a special parent.
           RIGIDITY was my anal-retentive boss
           SELF-INJURIOIUS BEHAVIOR was what I did on a night at the casino
           MOOD SWINGS came only with PMS
           And VALIUM was used by high strung socialites

           Before I was a special parent.
           I thought BUTTONS went on your blouse, not your belly
           GENES were labeled Levi or Guess
           And MUTATIONS were confined to the Incredible Hulk

           Before I was a special parent.
           I thought the IRSA was the IRS Association
           HANDWRINGING was what you did after an audit
           SEIZURE was what they did when you failed
           And RESIDENTIAL PLACEMENT was a jail term

           Before I was a special parent.
           STATUS was something you earned, not dreaded
           And when you got it, MOBILITY was usually upward
           A FINE MOTOR ACTIVITY was taking the Chevy thru the car wash
           And a GROSS MOTOR MOVEMENT was the universal one-finger salute

           Before I was a special parent.
           VACANT SPELLS were related to real estate
           SPASTICITY was a good Jerry Lewis movie
           The IDEA was just a bright little thought
           And GUILT came from something I did, not from something I didn't do

           Before I was a special parent.
           BALANCE referred to my checkbook
           CIRCULATION was about my hometown newspaper
           HYPERVENTILATION was limited to Rover's greeting
           And CURVATURE was very sexy

           Before I was a special parent.
           COMMUNICATION was about saying all the right things
           IEP was pronounced IPE
           INCLUSION meant tax added
           And IMPACTION was a speedway crash

           Before I was a special parent.
           My other children were called kids, Not SIBLINGS
           They played together, not INTERACTED
           And my husband's 3 most important words before drifting off to sleep were
           I Love You Instead of DID SHE POOP?

           Before I was a special parent.
           I thought shoes with VELCRO were for lazy people
           ADAPT meant telling someone to get over it already
           And ASPIRATION meant ambition.

           BUT ALSO

           Before I was a special parent.

           I didn't know that SORROW never leaves you where it found you
           I didn't know that such unbridled JOY could come from heartbreak

           I didn't know that my child would be my TEACHER

           I didn't know the meaning of UNCONDITIONAL LOVE

           I didn't realize that the little stuff is really THE BIG STUFF

           I didn't know how well someone could COMMUNICATE without words

           I didn't know that when God sizes us up, he measures the HEART, not the head.

           I didn't know that milestones are not as important as SMILESTONES

           I didn't know that my child would TOUCH the world not from what she has done, but from what she cannot do

           I didn't know the POWER of her powerlessness.

           I didn't know that I had so much to learn.

           by Kathy Hunter
           Copyright 2005

Monday, November 22, 2010

Just another day (week and month)

I wish that I had some really fun pictures to share or exciting stories from a recent outing with the girls, but we have been doing a lot of nothing lately.  Our life has been very normal, at least normal for our family.  Reagan does not seem to enjoy many outings in the last month (or longer) so it has been hard to take her places.  It is hit or miss on whether she will throw a massive fit once we arrive at our location.  And honestly, it takes a lot of effort to get 2 small children fed, dressed, in the car and then drive at least 30 minutes to wherever we may be going.  So it is completely not worth it if once we get there she is not happy.  So, we've just been hanging out.  We go for lots of walks around the neighborhood and try to go outside several times a day just to soak up some vitamin D.  We are home a lot, but she is happy and lately that has been more important to me than fitting her in a box of typical kid outings.  I am hoping that she will grow out of this homebody stage soon!

Until then, I have been lucky enough to find someone to come hang out with Reagan for a few hours a week so that I can take Lauren to things she might enjoy.  Tomorrow is her first class at Gymboree and I could not be MORE excited!  Call me lame, but I have always wanted to participate in one of these classes and what better time than when you get a Groupon deal!  It almost has the same excitement for me as seeing one of my girls in her first tutu, ready for ballet class.

Also tomorrow is Reagan's optometrist appointment that is giving me some anxiety.   We scheduled this appointment about 3 months ago when we noticed that her left eye seemed to be crossing a lot more.  I am hoping that there is an easy fix or that it's not big deal, but my gut is telling me that I am going to leave tomorrow feeling very deflated and upset.  Wish us luck!

Wednesday, November 17, 2010

To dream or not to dream?

I am generally not a person that does a lot of dreaming about life related things.  I am a realistic.  I set goals and accomplish them, but they are usually goals that are attainable, not ones that are out of reach.  Trust me, I am not saying that this is a good quality.  I graduated college with an Accounting degree, it doesn't get much more straight forward than calculating numbers on a spreadsheet.  And I love it the straightforwardness of what used to be my profession before I became a stay-at-home Mom (or domestic engineer) earlier this year.

But, lately I have found myself to be a dreamer.  I have met my match with Rett Syndrome because it is out of my control.  And that scares the begeezers out of me.  The only way that I have been able to cope is to dream that a cure is within reach, not only within Reagan's lifetime but sooner.  Like in the next ten years, but five would be ideal!  I dream that scientists are working hard, day and night, to make a difference for my daughter and all of the other girls (and boys) with Rett Syndrome.  I don't like dreaming.  I feel that I am putting so much of my happiness on this idea of hope.  There are times where doubt crosses my mind and I fear that we aren't as close to a cure as I think.  I fear that Reagan will never know the life of a typical child.

I had the pleasure of going to the Baton Rouge Spending Time Ending Rett benefit over the weekend organized by the fabulous IRSF Chairwoman, Kathryn Kissam.  I saw how compassionate people are about Rett Syndrome and finding a cure.  This event raised $200,000 for Rett Syndrome in one night!  In addition to being a successful fundraiser, it was an evening of awareness.  She played a recently released video that shows how Rett Syndrome affects the entire family and there was not a dry eye out of the 150+ people that attended.  Kevin Black had the honor of following up after the video and telling us how Rett Syndrome took his lovely daughter, Cortney, at the young age of 16.  He has been through all of our biggest fear and yet he still fights to find a cure for Rett Syndrome.

The next day I saw an email from the IRSF of a breakthrough by scientists.  The headline was that "Researchers Grow Rett Syndrome in a Petri Dish".  What?!?  This opens up the door for more testing and gets us one step closer to a cure.  Here is the article:  http://www.rettsyndrome.org/information-news-events/press-releases/researchers-grow-rett-syndrome-in-a-petri-dish.html

These two things were more to me that just great moments.  It was a sign that it is okay to be a dreamer and put my faith in a cure.

Wednesday, November 10, 2010

getting ready for school

Yesterday we went for orientation at the elementary school where Reagan is eligible to begin Preschool on her 3rd birthday, which is in February.  I use the word eligible because although we want her to start school for the social interaction and learning environment, we were not sure if this was going to be the right place for her because she has never been in a setting with several kids, other than the occasional play date.

The way it works when you have a special needs child is that they can receive Early Childhood Intervention (ECI) services (if they qualify, which means they need to be developmentally delayed) until the age of 3.  Through ECI they receive therapy services (speech, physical and occupational) where the providers come to your location (house or daycare) to provide therapy because it is an environment comfortable for the child.  Not all parents choose ECI services because some prefer to utilize private therapy companies.  However, ECI has been a lifesaver for us since taking Reagan to private therapy meant bringing along a newborn baby and now that Lauren is older, I don't have to worry about interrupting her naps.

On the child's third birthday, ECI services end and they are eligible for Preschool Programs for Children with Disabilities (PPCD).  The elementary school has a class designated for special needs children.  It is through this program that she will receive her therapy services.  The process to get your child in the PPCD program typically starts around 90 days from their 3rd birthday because besides the orientation, it involves an evaluation by the school district to determine your child's needs and the you have one or more ARD (Admissions, Review and Dismissal) meetings to develop the IEP (Individual Education Plan).  An IEP is just what it implies, a plan with goals and objectives for your child over the next year.

Now, back to Reagan.  She loved the class; I mean really loved it.  We watched her with bewildered faces because we haven't seen her that happy and excited in such a long time.  She walked really fast, squealing with excitement.  She went up to the children and teachers and smiled, her way of saying "hi".  She even might already have a boyfriend as one little boy kept following her around everywhere.  I am so relieve that this seems like an environment where she will thrive. 

I am really excited for the positive beginning and I hope the rest of the process goes just as smoothly.

Monday, November 8, 2010

Our story

I was looking back through the blog and realized that I just kinda jumped in to writing about Reagan and Rett Syndrome without providing much history.  Here is our story of how we came to Reagan's diagnosis:

Reagan was born a happy and healthy baby on February 24, 2008.  She was always smiling and was such an easy baby.  She hit her milestones within normal range for the first 10 months, but it was always on the later side of the range.  It was around 10 months that we started to notice that she was not hitting her milestones as quickly but mostly that she seemed to have no interest in stacking objects or putting things in and taking them out.   We voiced our concerns to her Pediatrician at her 12 month baby well-check but we were told not to worry, all babies develop differently.
We spoke to a new Pediatrician at her 15 month baby well-check visit because she had only just begun taking steps to walk.  She asked us if Reagan could follow simple one-step instructions, make hand gestures like waving, say words (she lost the only 3 or 4 words she had at 14 months), or mimic behaviors.  All of these answers were a "no" and we then realized that there was a big problem.  We immediately contacted Early Childhood Intervention and she began receiving services for Speech, Occupational and Physical Therapy and has continued since.  
Over the next 7 months we visited both a Pediatric Neurologist and Geneticist in search of an answer.  Three days before Christmas in 2009 the Geneticist drew blood to run a series of test ranging from an intolerance of foods to thyroid issues to Angelmans Syndrome.  We were even more stressed about finding an answer as soon as possible because I was pregnant with our second daughter and due in January.  We were concerned of a possible hereditary issue.  I received the phone call on a Friday afternoon, it was January 15th, that Reagan's results were positive for the MECP2 mutation and has Rett Syndrome.  The news was devastating for our family as we read online how it would change our daughter’s life forever, that our dreams for her future were not going to be realized.  But, it did not take us long to realize that she is the same precious, beautiful little girl that she has always been.

Sunday, November 7, 2010

Tough love

Ms. L comes over to do speech therapy with Reagan on Monday mornings.  She has believed in my little girl right from the beginning and has been a great source of information and support.  We are currently working with Reagan choosing between two items using both her eye gaze and hand to "tap" the picture to let us know her choice.  Reagan has shown us that she knows the name of this game by choosing the correct picture when asked to show us her baby, ball, lovey, etc.  This girl, she's a smart one, but let me tell you she is also very stubborn.  I am still trying to figure out which parent gave her this great trait!

During the last session Ms. L worked with her to make choices between her toys.  Reagan fussed a little but played along.  After about 3 rounds of this choice making, she decided she was done making choices and had enough.  So, Ms. L told her that she could take a break and watch her favorite tv show but she would have to choose that as her activity.  She showed her the dvd case (which we know she understands) and her lovey and told her to make a choice.  This is when she really showed her temper.  Usually when this happens, I quickly cave because who likes to see their little girl unhappy?  In the past I have helped her by showing her what I need and then I turn in on, hoping that if we walk through it together enough, she would start doing it on her own.

But, Ms. L's philosophy is that Reagan has learned that she doesn't have to choose because gullible Mommy will give her what she wants in the end (tv) without working for it.  We endured 25 minutes of a screaming, crying, unhappy Reagan.  It was awful. Completely heartbreaking.  We continuously explained to her that she just had to show us what she wanted.  We let her walk away and she would always come back and just tell us how mad she is and then walk away again.  In the end, she ended up making the decision and the world was a happy place again.  Since then, we do this every morning and she has gotten much better about choosing.  It's hard to give tough love, to do things with or for your children that don't make them happy but you know will make them a better person in the end.

Listening to Ms. L give her instructions on choosing a toy

Playing with her toy after her decision 

Using great eye gaze and hand touching of the picture to let us know her choice

Wednesday, November 3, 2010

Lauren - 9 months

It is hard to believe that my baby girl is already 3/4 of the way to being a one year old.  She has such a sweet personality and is funny at the same time.  She constantly makes us laugh with the new noises that she makes or silly faces.  I often sit and watch her in amazement.  I had no idea that accomplishing milestones could be made to look so easy.  A friend who has an older daughter with RS and a younger child that is typical told me that watching her younger child grow up is like having a first child all over again, and it is so true.
showing me her "stinker" face

swim class

bravely jumping off the side ledge

intrigued by pig at 1st trip to the zoo

loving her new lion


Tuesday, November 2, 2010

Where is Ms. Giggles?

I searched through some old blog posts, searching for a previous entry, and stumbled upon a video (click to view) of Reagan jumping on her mini-trampoline in February, an early 2nd birthday gift.  We used that exact same trampoline today for her physical therapy session.  The toddler in the video seems like so long ago, but it's only been a little over 8 months.  Yet already Rett Syndrome has taken away so much from her.  The thing that I miss the most is how happy she used to always be and a giggling ball of sunshine.  It is so rare lately that we hear her giggles anymore or that she seems truly happy.  If she is having a really good day, she'll give us smiles and maybe a giggle.  She will come over to us and acknowledge us more, but most days she seems so indifferent.  I hope that this stage of Rett Syndrome ends soon and our happy little girl will be returned full of smiles and laughter.

Monday, November 1, 2010

Friday, October 29, 2010

The Purple Card

Not long after we got Reagan's diagnosis I joined an organization called Girl Power 2 Cure (girlpower2cure.org).  It's a non-profit organization founded by a Rett Mom to raise funds and awareness for Rett Syndrome.  It is through this organization that I ordered what is referred to as "The Purple Card."  These are cards that I hand out when I am out with Reagan and I know that people are curious of her condition.  I will be honest, I am terrible at describing Rett Syndrome, the words just never seem to come out right.  However, this card takes care of that for me and eloquently describes it so that I don't have to fumble over my words.

A few weeks ago I took Reagan to get fitted for a new pair of shoes.  Obviously the sales lady had a lot of direct interaction with Reagan and I knew she was curious but would never ask.  So, as I was checking out I handed her a card and told her that it explained my daughter's condition.  I thanked her for being so kind and she thanked me for sharing Reagan's story.  I left feeling so happy because I knew that on that day two more people (there were 2 clerks in the store) knew of Rett Syndrome.  Here is a picture of the card:

Wednesday, October 27, 2010

Words that hurt

First, I will admit to being guilty of doing the exact thing that I am about to rant about.  But, that was when I was a kid and had not learned to be completely compassionate; before I learned that words can be so hurtful.  And it was definitely before I had a daughter that has Rett Syndrome.  

It is very hurtful when people make comments about the "short bus" or use the word retarded in a flippant way, or even say that their child did something and it made them look like they were "special".  All of the above has happened in the past several months, although nothing has ever been said directly to me.  It has been things that I have come across that other people have said online, not knowing that a parent with a special needs child would be coming across their words.  These comments really tick me off and I am not always so good at not calling out the person for being so insensitive of people that don't fit in society's definition of normal.  My daughter will be going to a special needs class next year, and she might even be riding the short bus.  My daughter's diagnosis has in the past been misclassified as one who is mentally retarded, although that has been disqualified now that children with Rett Syndrome have found ways to communicate and can show that they are intellectuality able, just trapped inside their little bodies.  And the way my daughter walks is clearly not perfect, she probably looks "special".  But I am thankful for ability to walk and love the special things about her.  


I challenge all of you to remind the person that might make comments of this nature that they are not funny.  That comments like this hurt people and makes it look like being a special needs child is a laughing matter.  I'm not longer laughing at the crudeness of these comments.

Thursday, October 21, 2010

Puppy love

I took this video of Reagan playing with our dog, Emmitt, a few weeks ago.  She loves her dogs a lot and has always gravitated toward them when we are outside.  The feeling is very mutual and I remember Emmitt being protective of Reagan when she was a baby.  I hope all of the puppy licks doesn't gross any of you out! :-)  Oh, and again sorry for the poor video quality as once again I used my cell phone instead of the brand new video camera that was sitting on the kitchen counter.

video

Sunday, October 17, 2010

Screaming fits

The past week has been a difficult week for Reagan.  She has been more tired than usual during the mornings, although not much has changed with her sleep pattern or medications.  She has had more screaming fits than I can even count.  I don't know if the screaming is just another fun RS symptom, pain related, frustration from not being able to talk, or just a 2 year old thing...or maybe a combination of all the above.  We try to comfort her when she is upset but it only seems to upset her more.  Most of the time the only thing that will calm her down is her favorite tv show and there were a couple of days where even that didn't work.  I look forward to the day when she can communicate with me to voice the pain, frustration and choices that she would prefer.

Tuesday, October 12, 2010

Strollathon totals

The numbers are final and the updated total money raised from the Austin Strollathon is $19,211!!!

I am so appreciative and amazed by the outpour of support for our first fundraiser.  I am touched by the people that got involved in helping making this event a success because I know that it could not have done without them.  The hope for a cure is my saving grace on the bad Rett days.  The biggest obstacle in getting a cure is the funding of research for the brilliant scientists in the lab that are working hard every day to help our girls.  This fundraiser supports them and the IRSF in reaching that goal so thank you to the amazing people that donated, volunteered, coordinated, walked, sang, and spread the word about Rett Syndrome!