Katie's Angel

I would like you to read two of my favorite quotes and please read them slowly so they really sink in....

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." - Albert Einstein 

"To the world you may be one person, but to one person you may be the world." - Heather Cortez

When I read these there is one person who I think of every time and that is a lovely woman named Amy.  Amy is Anna Cate''s angel.  

We met Amy, five years ago when Anna Cate was in private school and instantly feel in love with her.   Amy worked with Anna Cate on a rotating basis at school and when it came time to leave the private school we asked Amy if she would like to continue working with Anna Cate.  That day changed our lives forever.  Amy is the best thing that could have happened to Anna Cate!   She is smart, fun, beautiful, and everything in between.  But what is most important is she "knows"  Anna Cate.

Amy is with Anna Cate at school throughout the day helping her in every and any way she needs it.  Not only does she help her learn her school work in a modified version of what Anna Cate can understand, but she doesn't mind putting on her "girlie" hat and trying to think of the best ways to help Anna Cate be like her peers in any given situation.  She wants her to be a typical 9 year old!  She asks Anna Cate's friends constantly for ideas and wants their perspective as they are the best examples for Katie.  There is only one reason I know that Amy fights so hard to Anna Cate and that is because she believes in her.

Believing and repetition are two words that go hand in hand when talking about the relationship between Amy and Anna Cate.  Amy believes that Anna Cate will and can do anything if she is taught in the best modified way for her and there has to be constant repetition.  She sees it and we see it working every day!  As in my last blog you read about something as simple as drinking from a cup.  Well, since September 7th, the first day of school, Amy has been working on Anna Cate greeting her typical second grade teacher with a "Good Morning", verbally.  Last week she did it with no prompts as soon as she walked into class!  Not only can you see on Anna Cate's face how proud of herself she is, but the excitement on Amy's face was that of true love!  She knew she could do it and she practiced with repetition every day in a normal setting (like at circle time and that initial greeting) and after that hundredth and whatever time, it clicked and came out of her mouth beautifully!

Amy also knows Anna Cate's body language almost better that I do sometimes!  Anna Cate has multiple "looks" that she gets and you have to know which "look" you are getting as there are many different ways to deal with each  "look".  Amy has got them all down and has for many years.  This is huge in working with Anna Cate, KNOWING HER BODY LANGUAGE!  We used to have multiple "screams" and they all meant something different and they all sounded a little different!  Thank goodness this phase has passed!

Amyis always reading books on various ideas, techniques, you name it to help Anna Cate.  She is always looking for the next "thing" to help her with or to find the right "thing" to help her succeed in a current area.  And Amy too is always trying to help in the area of Katie's behaviors.  That is one mountain we all can't wait to climb and then look back and say, "see ya"!

Amy is not only a teacher, friend and angel to Anna Cate, but she is also a friend to our whole family.  But calling her a "friend" doesn't seem to do her justice.  She is more than a "friend", she is family.  Amy not only loves and cares for Anna Cate, but Betsie and Eli also have a special place in her heart and she shows it to them too!    And she is always there for me; whether it is helping me with Anna Cate when I need it, saying the right words at the right time when I am feeling down, or giving me a hug when I need it most.  Amy is one truly amazing woman and I am so happy she is a part of our life.

Amy lives her life as though everything is a miracle!  And to Anna Cate she is THE WORLD!  They share a very special bond and anyone who comes into contact with them can see this immediately.

Amy, I can never thank you enough for being the most amazing friend, teacher and angel to Anna Cate.  We all love you beyond words!

XOXO

P.S. And if you could meet Amy's husband, you would be so lucky!  He is equally as amazing and supportive with our family!  They are the perfect pair!

We're all in this together

Like most 9 year old’s, one of Anna Cate's favorite movies she loves to watch is High School Musical, you name the number; one, two or three, she likes them all.  I only thought it was appropriate to base today's blog on one of the main songs from HSM, “We’re all in this together”.  Listen to the words in this one verse:

“Everyone is special in their own way

We make each other strong

Were not the same 

Were different in a good way

Together's where we belong”

Raising children is difficult enough, but raising a child with special differences is extra challenging.  It takes a team working together to create the type of environment Anna Cate needs in and out of school to succeed.  At school Anna Cate's team consists of six people on a daily basis and nine on a weekly basis.  Anna Cate needs constant attention throughout the day to help her from daily activities of living to school work.  Her school team help her with occupational therapies, speech and language therapies, to coordinating how to adapt the regular second grade curriculum to a level she can understand and everything in between. 

Anna Cate not only receives therapies 3x a week in school, but also 3x a week outside of school, with her physical therapist, another speech and language pathologist and her aquatic therapist, yes therapy in the pool…which is her favorite by the way! She doesn’t realize she is actually working while having a fun time!   It is so important that the therapist or teachers working with Anna Cate (or any child) must believe in her.  She knows!  We are very blessed that the confidence of all 12 (yes, I did say 12) professionals who work with Anna Cate on a weekly basis, is as high as it is.  They know she can do it, so they push her and Anna Cate let’s them.  She wants to do just as her peers and you can see how hard she is working.  Little things like drinking from a cup that we all take for granted, took months for Katie to learn-not because she “couldn’t”, but because her “apraxia” wouldn’t let her.  We were very persistent and encouraged her with repetition, repetition, repetition and she got it!

Anna Cate's second team that is “all in this together” is of course her support at home.  But please know that her support at home, goes way beyond me and Will.  If we didn’t have the amazing support from our families, I honestly don’t know how we would do what we do daily.  My parents help out tremendously and then some….whether it is driving Anna Cate to therapies, Betsie to dance, picking Eli up from school, making a dinner for us one night, spend the night so we can get one night of decent, uninterrupted sleep, driving out of state to take Anna Cate to her doctors, you name it- they are there! My mother-in-law comes over almost every night to help me get through the making dinner, feeding dinner, bath time routine…you never know what the day is going to hold, and I  want to make sure we try to stay on our routine as much as possible.

When there is someone in your family who has special differences everyone’s perspective of life changes.  Betsie, our 6 year old, and Eli our 3 year old, are incredible siblings for Anna Cate.  They are honestly the best gift we could have ever given to Anna Cate.  

Below is what Betsie read at our event in November.  I asked Betsie some questions and then she answered while I wrote.  These are her words 100%!  All I did was type it up in a big font with big spaces for her to read.  

Hi, my name is Betsie and I am Anna Cate’s 6 year old sister.  I am going to tell you what it is like having a sister with Rett syndrome, what I don’t like about Rett syndrome, and what I love to do with my sister.

Rett syndrome is not fair.  Rett syndrome has robbed my sister of her voice.  Anna Cate has some words, but she can not talk like me.  Pretend that her whole class had to do a test and Amy was not with her and they did not know she had special needs.  Then when they talk to her she would not answer.

Because my sister can not talk she gets frustrated very easily.  When she gets really frustrated she gets fiesty.  I do not like it when she gets fiesty because she hits her head really hard and she gets bumps on her forehead. 

I also do not like that she can not answer me when I ask her a question.  So I have to give her choices with my hands and ask her to point to the right answer.

Because Anna Cate has Rett syndrome, it makes fun times hard for her.  Like, at Easter when we have Easter Egg Hunts she does not get that many eggs in her basket because she can not run fast and spot the eggs hiding as fast as I can.  So I have to give some to her to make our baskets even.  It does not matter though how much I have because she has Rett syndrome.

And when she is sick it is hard for us to know since she can not tell us.  Sometimes we really do not know until she has thrown up, that she is sick.

I do not like Rett syndrome because:

I wish my big sister could do the things other big sisters do with their little sisters

I wish Anna Cate could go down the slide with me, but because she gets nervous easily she does not like to do this

She can not ride her bike with me and take me out for a walk

All my friends sisters can do this and I wish mine could too.

But with all this, I love my sister and we have fun together.  I love to play ball with her.  She has a great drop kick.

Color with her when she is in the right mood and does not throw the crayons.

Swing with her, she loves to swing.

Sleep with her sometimes when we have guests come to visit…like tonight!

Swim with her…she is a little fish in the water.

And play teacher with her school work.  She loves to learn and I love to help her learn.

Please help me to get the chance to have a normal relationship with my big sister one day, by being a hero tonight.  Remember, we are all in this together.

Anna Cate is a blessing to us all and she teaches us all daily on the power of believing!  Anna Cate, we do believe and we are with you every step of the way!

                                                                 

                                                             Photographed by Hough Photography

628 miles in 31 hours.....

Well, I am finally able to sit down and write after our fast trip to New Jersey to take Anna Cate to clinic.  Clinic is always bittersweet.  We get to see the top doctors and visit with amazing families who we have met once or twice, but instantly connect with as we share something that many people can not relate.  Every time we see the doctors we cross our fingers in hopes that we get a clear report.  Anna Cate got GREAT reports on her measurements (weight, height, BMI), GREAT reports from the main Rett doctor, but the orthopedist....mentioned the "S" word--surgery.  

The surgery would be to lengthen the tendons in her left leg, which explains the fixed contractures (abnormal shortening of muscle tissue, rendering the muscle highly resistant to passive stretching) in her Achilles.  Achilles Tendon Lengthening refers mostly to a surgical procedure whereby the tendon is stretched to allow a child or adult to walk flat-footed without a bend in the knee or to relieve chronic pain. The procedure is designed to lengthen a tendon that has not formed properly or has been injured.  I did not think that we were at this point yet and wow it was a blow!  Many of our friends have had this done with their daughters so I know there is a light at the end of the tunnel (way down there....).  The one positive thing for us is that it is only one leg we are talking about.  But the biggest challenge for us is that after surgery for two weeks she is to put zero weight on that leg!   So the way I look at it is, for 2 weeks we are going to be living in complete hell with our "team" in full force, week 3 and 4 will be just hell, as she is still in a cast, but it will be a walking one and then week 5 we are more on stable ground, with AFO's until she is at the point where she can go back to just wearing shoes with nothing in them for support. 

So now the question is when to do this?  The doctor we met with said that we are at "that fork in the road" now.  We need to make the decision, before her brain is "hard wired" to deal with that leg the way it is.  Well, for those of you who know Anna Cate, her favorite time of year is summer as she loves nothing more than the POOL!  So doing this during the summer, would be absolutely cruel to her.  But waiting till Christmas break, when she is off from school for two weeks, may be too long.  Ugh!  

If we do it in the very near future, I just want to make sure that we are home free for prime pool time, which is mid June when she is out of school for the summer!

Needless to say the ride home left us with a lot to think about, as for Anna Cate, who is extremely on the go, this will be extremely hard for her.  God Bless her!

And what would we do without Poppy????  Poppy always accompanies us at doctor appointments and long trips for Anna Cate's care without question.  And it is so nice to have another set of ears and eyes listening and watching to help us figure out what is the best for Anna Cate.  Thank you Poppy for always freeing up your time for our family even if it wasn't convenient for you.  We love you Poppy!!!

Anna Cate is very blessed to have such an amazing support group at home and at school.  She has many cheerleaders that only want the best for her.  While I know the road ahead is going to get bumpy, I know that we will survive with the incredible "team" we have for her.  However, this next mountain, she may need a little piggy back ride to get to the top!

P.S. Let's hope I have found the "miracle" for her behaviors by this point too, otherwise our little Ninja will have an advantage with her cast!

Reality Bites

Well, today was an interesting, yet at the same time a typical day for us.  Started out with an AT (augmentative technology ) evaluation for Anna Cate.  It went really well and now we have lots of thinking, but more "practicing" to do with her.  She currently uses a SpringBoard Lite, but as the name states, "lite", it isn't light enough for her to carry around on her own.  So she is also using the Go To Talk 2 which we recently introduced and is doing really well with it.  This is the device that she carries around school with her and to the playground.  Very "light" and portable!  However, we would like one device to do both things.  So she will also be training on the ipad with the Proloquo2go application.  We feel that the software layout on this program is going to work better for her than the programs she has been using.  She has such amazing finger control and isolation, that I know after a lot of repetition she will get it.  Practicing we will do!

While we were there my little guy was home sick for the third day this week.  He has had a really rough winter.  And thank goodness my mother was in town visiting, because she was able to take him to the doctor for me as it seems he is getting worse, rather than better.  And because the girls had an event at school tonight that I had to get them ready for.  Well, for Eli....they ran all the routine tests (strep, flu, etc) and all were negative so they drew blood and his white count was high.  So after a chest xray to rule our pneumonia, they want to do a repeat blood test tomorrow to see where his levels are. He looks so pitiful and it is so sad to see him without the spunk!

All day we were talking about the event at school and I was getting the girls ready for the 50's party, when the biggest Rett challenge happens, Anna Cate gets upset and goes into a behavior.  The switch was flipped out of no where!  We are supposed to be walking out the door in 20 minutes and I know this will not be happening.  At the same time that I was looking at the clock so does Betsie and she starts to get upset that she is going to miss the whole thing.  After promising her that she will not miss it, I am praying that the behavior ends and does so quickly!  Time is passing and there is no way that Katie is going to be ready to go.  I work a plan out between my parents and Will, that I will take Betsie and then when Anna Cate calms down, Wally will call me and I will meet them at the door with their tickets.  Perfect!  Betsie and I are out the door...only 30 minutes late to the party.  But I must put in here, that after I promised Betsie that she would be going, she stopped asking and waited so patiently for me.  When inside I know she upset and all she wanted was to get there as soon as it started to see her friends.  

On our drive over I thanked her for being understanding and patient and told her I know it is rough growing up in a house with a sister who requires so much attention and time and sometimes mommy and daddy don't like it either.  But this is our life and there is always going to be a little give and take.  As I try to have a heartfelt and deep conversation with her, she promptly reminds that she is six years old by responding, "Mom, the clock says 5:54 and I want to get there at 6:00, we need to move it".  So I stepped on the gas and we arrived in the parking lot at 6:00 on the nose!  In my defense we live very close!

As soon as we walk into the gym, I think to myself, there is no way that Anna Cate would like this.  The music was so loud you had to yell to talk to the person next to you.  I immediately went out into the hall to call Will to let him know, that even when she calms down, I do not think that Anna Cate would enjoy herself due to the level of the noise.  I think that we made the right decision for her.  But I have to be honest, that decision was awful for me.  

I spent a little time alone walking around the silent auction tables and a neighbor came up to me and we started chatting.  I mentioned that Anna Cate was supposed to be there and what happened and found myself getting teary eyed.  It was one of those moments when you wish your daughter was a typical peer and she was there enjoying the night dancing away like her sister. It was one of those moments when you wish you never heard the words Rett syndrome.  It was one of those moments that you realize another childhood memory (school dances) may or may not be a memory for your daughter.  It was one of those moments that just sucks!

After looking at all the items (and bidding on a few!) I walk back into the main room to see that they are having a hula hoop contest.  They are doing the first grade at this moment and when the first grade is finished and they call second grade it is at this time, that I realize I missed the Kindergarten class!  Nice, I just missed Betsie doing the hula hoop contest!  I felt so bad.  And then I felt horrible, when I find out that she won!  But then there was some issue that another person won too so they had to have a hula hoop off to see who the real winner was.  And the other girl won.  All the parents that know me and Betsie came up to me and said that she won the first time and they don't know what happened.  I missed all the drama!  And I love drama!  I ran around trying to find someone I knew in hopes someone took a picture and thankfully I found two!

I want the best for Anna Cate and I want her to be able to experience all the same things her peers are, but I also know there are going to be many things I can not control and I just have to let it go and not beat myself up over it.  So while seeing Betsie hula hooping would have been the pick me up I needed tonight, just seeing her face grinning from ear to ear running around with all her friends in tow was perfect and put the smile back on my face.

The Threat of Rett

Many of my followers know what Rett syndrome is, but for those who are unfamiliar with the world of Rett, I feel I need to introduce you to this evil monster that has taken over the life of my daughter.

Rett Syndrome is a debilitating disorder which most often affects healthy little girls just after they have learned to walk and say a few words and begins to halt their otherwise normal development.  This usually happens between the ages of one to three.  As Rett syndrome starts to show, girls lose acquired skills, normal movement and speech.  Girls are left unable to communicate or use their hands to hold, carry or manipulate objects.  Over time, girls who have learned to walk often lose that ability as well.  Loss of motor control begins, essentially locking these girls into their own bodies that do not work, leaving them scared and fearful of the unknown.  

Rett syndrome is most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay.

Despite all the physical disabilities that affect girls and women living with Rett syndrome, the girls are believed to be functioning mentally at a much higher rate than was ever thought!

Rett syndrome is caused by a single gene mutation (MECP2) that leads to underproduction of an important brain protein.  Rett syndrome is the most severe form of autism.  Rett syndrome is a REVERSIBLE disorder!  Research has proven that once they get the protein levels back to their normal levels, symptoms of Rett subside.

There are many complications that can affect the girls and women living with Rett syndrome and they include:

• Disordered breathing
• Severe digestive problems
• Difficulty eating, chewing and swallowing
• Orthopaedic abnormalities such as  scoliosis and fragile bones
• Disrupted sleep patterns
• Extreme anxiety
• Seizures
• Impaired cardiac and circulatory function
• Parkinson-like tremors
• Repetitive hand movements like hand-wringing/washing
• Sudden and unexplained death

Throughout all the confusion going on in their bodies, they are waiting patiently for us to unlock the door to their recovery.

Researchers at Harvard, Baylor, UVA, Weill Cornell, Emory, Salk Institute, University of Edinburgh and dozens of other top institutions are really getting into Rett Syndrome. They say Rett syndrome is considered a "Rosetta Stone" as a cure for Rett syndrome would also have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer's and many other disorders.

Rett syndrome may be the Golden Ticket to help millions who are suffering from many disabilities.

"We hope that Rett Syndrome will be one of the first childhood neurological diseases to be cured.  A successful treatment for Rett syndrome could potentially lead the way to treatments for millions of others sufferers of pediatric neurodevelopmental disorders."

--Dr. Omar Khwaja, MD PhD  Medical Director Rett Syndrome Program Children's Hospital Boston

We are very blessed that Anna Cate's mutation of Rett syndrome is mild and she does not suffer from many of the complications that are associated with Rett syndrome.  While many times we talk about what they can't do, I like to focus on what she can do!  

She can walk, run, and jump (especially on the bed and laughs knowing she is doing something she shouldn't).  She does have a growing vocabulary of about 70 words (mind you that she does not use all 70 words every day) and she can make the sound for almost every letter of the alphabet!   While she does have the stereotypical hand-wringing, she can hold her own cup to drink, she can use her own stamper to stamp her name (and approval!) on things, she can color (in her own Picasso style), she can dribble a ball like the next Anne Donovan (yes I had to look up a famous basketball player, as this is not my sport!), she can manipulate her computers to communicate (though at times there is still some frustrations), she can use her hands with no problem to tease just like a typically developing child (loves tug her brothers ears, swipe things off the counter; Swiper, no swiping!), she can use her hands to flip through the pages of her favorite books or magazines, she can use her hands to touch my face softly (or to grab a hold of my nose like she is going to pull it off!) and she can use her hand to hold mine!  

It amazes us that when we want to pull her hands apart it is like prying open an old rusty door that you think is going to break when you finally open it, but when she wants to unlock her hands, it is with ease.

Rett syndrome obviously affects Anna Cate's ability to communicate like a typical nine year old and with this she has behaviors out of extreme frustration and some anxiety issues.  We call her our little Ninja as the moves this child pulls out is very impressive when you think that Apraxia (people with apraxia often cannot perform controlled, purposeful movement, despite having the physical strength and intellectual thought and desire to do so) is a huge problem in girls with Rett syndrome.  We look at her while she is our little Kung Fu Panda and wonder if for the moment the apraxia switch is turned off!  Joking aside, this is the hardest part of Rett syndrome for us and our family.  It is difficult for us to carry out activities on a moments notice for the idea of a sudden transition can cause a behavior.  Or being someplace fun (i.e. the zoo) can be a shortened trip for "the switch with the associated look" gets flipped for an unknown reason (we are constantly trying to figure out why things happen) and we have to leave.  Trying to figure out the sudden "flip of the switch" is an ongoing battle in our house.  When you think you have it figured our she stumps us again.  The lack to communicate is the most frustrating part of Rett syndrome for our family.   We are the parents and adults and can deal with situations like these better than Anna Cate's siblings who just want to live in the moment and don't want their parade rained on!  The quote, "What doesn't kill us, make us stronger", is all I can think about during these times for Betsie and Eli.  They have no idea what it means, but I think they are starting to get the idea.


Another common characteristic that affects Anna Cate is disruptive sleep patterns.  Sleep for Anna Cate lately is like that of a newborn baby.  For her whole life she has had sleep issues, which ultimately lead us to having to lay with her until she falls asleep at night as she doesn't like to do this on her own (and trust me we have tried, but at some point you do just give up).  This was fun when she was younger, but now it would be nice to put all the kids to bed and have some "me" or "us" time like "typical" parents.  Her going to sleep now is 100% better than when she was younger and Wally would drive her around (to the next state it would seem) to get her to fall asleep praying that the transition from the car to the bed would not wake her up!  This was not fun!  Then we tried Melatonin, which works short term, but in the sense that it helps her FALL asleep, but does not KEEP her asleep.  We also tried another medication that many parents praise for their children with Autism or Rett syndrome, but for Anna Cate it was not the right mix.  It didn't help her stay asleep (at this point she hadn't slept a full nights sleep in 4 1/2 months!) and it started affecting her gross motor skills and this Mommy was not going to trade one problem for another!  I will start my own IV drip of caffeine before I will have anything else happen to my angel.  So after much searching on the Internet I found a website, Native Remedies, that is all natural supplements that are to produce the same effects as medication.  We are two weeks into a NATURAL sleep aid and (knock on wood) things are going really well!  Out of a week she is sleeping 4 nights straight through!  Things can only go up from here.  I think we are almost over this mountain.  Now, I need to look into a natural remedy for behaviors.

Life for us with Rett is not about she can not or will not, but she WILL and DOES.  Every second of every day matters and its all about practice.  After all practice makes perfect!

Photographs courtesy of my dear friend of Hough Photography.

These images have been a favorite since the day we met!

Entering the world of blogging!

***On October 21st, 2012, I changed the name of this blog from Her Climb, to Our Everyday.  I not only wanted to blog about our journey with a daughter with special needs....Rett Syndrome, but I also have two other amazing children I wanted to share with you!  While the song, Her Climb is still very special to us, I felt the need need to change the blog name.

Below is my very first post from when I first entered the world of blogging....please  continue reading, but I wanted to clarify the name change for you!  Thank you for visiting my blog and I hope you will continue to follow this blog, as well as my other one!

I can not believe that I actually decided to do a blog about my daughter and not only her life with Rett syndrome, but how our family lives day in and day out with Rett syndrome.  And I couldn't think of a better morning to start than today.  Anna Cate, my darling daughter who lives with Rett syndrome, woke up at 3AM for the day and then two hours later, my youngest, Eli, woke up throwing up all over daddy! 


And you are probably wondering why I have chosen the lyrics to Miley Cyrus's song, The Climb,  to be the first thing that you read when you are on my blog.  There are two reasons. 


First and foremost, Anna Cate loves Hannah Montana, aka, Miley Cyrus.  Seriously we watch her every day and believe it or not our entire family has one whole dvd of 4 episodes memorized.  Even our three year old!  As I type this we are watching our favorite one and he is repeating every word they are saying at the same time!  Hannah Montana gets Anna Cate to calm down if she is upset and makes her happy.  It is that simple, it makes her happy!


Second, the words to The Climb, couldn't be more perfect to describe Anna Cate and her daily struggles with Rett syndrome and how they affect her.  Rett syndrome affects everyone differently and we are blessed that Katie has a mild mutation of this syndrome.  


The struggles she faces are the fact that she can not speak like a typical 9 year old, she can not use her hands functionally like a typical 9 year old, she has to have supervision throughout the day unlike a typical 9 year old, she needs help eating unlike a typical 9 year old, she needs help walking up and down stairs unlike a typical 9 year old, and she can not get dressed like a typical 9 year old.


But every day she takes chances and tries to do what her peers are doing, whether it is fighting to hold her cup herself, practicing to hold her crayons and other art supplies, practicing cutting with scissors, practicing feeding herself with the proper utensil, practicing typing on her keyboard and practicing to say new sounds and words.  And she loves to learn and wants to learn the same things in school that her peers are learning. Some days she can do it easily and others it is a day of frustration.    But with frustrations she doesn't stop trying because she wants to get over that mountain and gain another skill that she can check off her list!  


While watching her struggle and try so hard breaks our hearts, seeing her win and accomplish the climb to the top is priceless, as the view is amazing!