Alicia-8 yrs old-Our Rett Angel

Wednesday, October 5, 2011

Alicia's Pony Rides and Bake Sale Fundraiser

This past Saturday, October 1st we held a Pony Ride and Bake Sale Fundraiser for Alicia.  It was held at Oakendale Farm 315 Shrub Road in Bristol, CT.  My cousin Alison runs this farm.  We were so concerned that the weather was going to be rain all day (it had rained all night Friday and was raining as we were setting up Saturday morning).  However, about 15 minutes before the Fundraiser was to begin, the rain stopped, the sun came out and the rain held off for the entire length of the fundraiser!!!  For all of my family and friends who prayed A LOT during the week, THANK YOU!!!  God heard our prayers and they were answered.
We held this fundraiser because Alicia is in need of a Rifton Blue Wave Toileting System, an adaptive stroller and a communication device.  Because she is non-verbal, we need to be able to teach her to communication with her hands by using a device.  We are considering an iPad since there are many commmunication applications out there for it that would be appropriate for Alicia.
So I would like to brag on my family and friends that helped out for the fundraiser.  I have the best family and friends in the world!  So many of my friends volunteered their time to help make posters, work the bake sale, help us take care of Alicia so she could be there with us during the entire event, so many people baked goods for us, people helped set up, people helped break down and pack it in, and people were constantly asking me to put them anywhere I needed them.  I has so much help that it completely overwhelmed me.  To see just how much others care for me and my family humbles and overwhelms me at the same time.  It is nice to see that there are still people out there that do care and want to help a family in need.
We don't sugar coat what we go through on a daily basis with caring for Alicia.  We have to take it day by day and sometimes it's hour by hour.  To be brutally honest, there are days that Rett Syndrome just sucks!  But we do it because we love our children and they are perfect to us. 
To all those who always take the time to listen when I'm upset or worried, THANK YOU!!!  You all know when I just need a hug, a shoulder to cry on or an ear to listen.  I love each and every one of you more than you will ever know.  Thank you again for making Saturday so special to me and my family...four days later and I still cry at night because I am still so overwhelmed of how many people love and care for us.  I love you all also!

Wednesday, August 31, 2011

A Long Few Days

Okay, it was bad enough that Hurricane Irene decided to cut my girls camping weekend super short, but then she went and got rid of the power so Alicia missed three days of school this week.  It has been a very trying few days for me being home all day with Alicia.  She was very upset and agitated at times because she is used to her school routine.  We had lots of screaming, biting and hitting this week out of pure frustration and almost a broken nose (mine).  
However, even after all this, I try to keep a positive perspective (which is truly trying).  I need to keep in mind that it's not Alicia doing this out of a behavioral problem, but it's the Rett Syndrome taking over and her not being able to control it.  Could you imagine if you couldn't talk and verbalize your wants and needs?  It has to be completely frustrating, I couldn't imagine!  As many parents of special needs children; we get "the look" in public because people think we can't control our children.  I used to always bite my tongue and not say anything but there have been a few times that I haven't.  People should never make a judgement by just watching how our children act in public, do they even realize what it takes for us to get out of the house and to the store?  No, they have no idea!
Be thankful if you have children that can speak and are healthy.  
I continue to take each day one at a time and will continue to do so.  
I am looking forward to Alicia's appointment in NY.  She will be seeing specialists at Rett At Montefiore, that specialize in Rett Syndrome.  We are hoping to get some guidance in how to care better for Alicia.  There will be various testing I'm sure that the team will want to do (some repeated because she hasn't had them in a while (like an MRI and EEG) and that means many trips to NY.  But I don't mind in the least.  Her appointment is coming up on September 9th so I will be sure to fill everyone in.  
Alicia's fundraiser is also coming up soon.  We are having a Pony Rides Fundraiser for Alicia at my cousin's horse farm in Bristol.  It is at Oakendale Farm 315 Shrub Road Bristol, CT.  We have gotten a great response from people that are going to be attending.  We are even going to have a bake sale because so many people have shown interest in baking goods and donating their time to help sell them.  I could never thank my family and friends for the amount of love and support that they show me and my family.  Even though most don't realize how truly hard taking care of a special needs child is; they admit that and just ask how we're doing or give a hug and a kiss.  That means more to me than most will ever know.  
I hope everyone is doing well and I look forward to seeing many of you soon! 

Sunday, August 14, 2011

2011 Kate Foundation Gala

The first Kate Foundation Gala will be help Saturday September 10, 2011.  Myself and 7 other family/friends are going to be attending this event.  I am looking very forward to it, what a wondeful cause.  I will also be meeting new parents and I'm sure future friends of children with Rett Syndrome.  What a blessing to be able to expand my network of contacts and support!! 

On The Hunt For More Answers/Direction and Support

As some of you already know, I have been researching two different hospitals to possibly take Alicia to so that she can see a team of specialists that actually have knowledge of Rett Syndrome.  The one that we decided we would pursue was The Rett Syndrome Center at The Children's Hospital at Montefiore in New York.  So I had actually emailed a few messages back and forth with the director of the center (the neurologist) and she always got back to me very quickly.  I had heard her name a few times on Facebook from parents that take their girls there.  They have had nothing but wonderful things to say about the center and the team of specialists that work there.  
So thus began the requirements to make before we even got an appointment date.  I had to fill out a 13 page intake packet on various information about Alicia from the time she was born up until now (keep in mind she's already 8).  The registration form was a piece of cake, one page and just basic information (not many brain cells or sanity lost there).  Last Thursday I sat down at my computer to begin filling out the forms (decided that I would fill them out on the computer since I got them through email and then just email them directly back to the center to expedite the process of getting Alicia's appointment).  
I sat at my computer (luckily at the time I was home alone) and began the tedious and heartbreaking work.  I say heartbreaking because the type of information I was filling out was when my daughter reached her developmental milestones (if she reached them, when she reached them, if she "lost" them and if she regained them).  All these milestones had to be filled out in the form of months.  As I sat there reliving all the milestones that Alicia hit so late, made but then lost and never regained and some that were never gained at all; tears streamed down my face.  It was like reliving everything all over again and it hurt badly.  
I was finally through about to page 10 and had to go get Alicia off the bus and Hailey from camp.  I "saved" my file and then when to re-open it.  However, the file was nowhere to be found!!!  I thought I had saved it after changing it from a "read-only" file but it didn't work.  I was absolutely devestated!!  
To make a long story at least a little bit shorter, I restarted all the paperwork again, finally did get if finished and off by email Thursday night, it had taken me 7 1/2 hours to do it.  So I ended up reliving it about three times once I had finally finished.  I was emotionally, physically and mentally drained, I didn't have anything more in me.  
The next couple of days were met with frustration and anger that why do we have to go through this and why does my daughter have to have Rett Syndrome.  There are days that I truly hate Rett Syndrome and these were a few of those days.  There were some other stresses going on also and by Sunday night I had just had enough and broke down.  It's not the first time I've "broken down" but let me tell you, this one was a do-zee!!  When caring for a child with special needs, parents often wonder: Why, Why Me?, Why did our child have to have this horrible disease?".  I still do that a lot.  But I know that God gave us our daughter because we were meant to care for this special little girl.  I continue to question it and will continue to question it, that is something that is going to take me a long time to work through. 
A "light at the end of the tunnel" to this blog is that we have gotten an appointment for Alicia to be seen by the team of specialists in New York.  I was so nervous calling our insurance carrier, petrified that they were going to tell me that these specialists were not covered.  I was especially nervous because these specialists are all of out state.  But praise God, they are covered.  They already got us in for an appointment on Sept 9th.  Alicia will start off seeing the director (the neurologist) and she is also going to be seeing a gastroenterologist.  They asked me what other specialists we wanted to see that day but I figured two was more than enough to start off with!!  
I am looking very forward to being able to ask my questions that I have had for years to a team of specialists that deal with Rett Syndrome.  This disease is like no other.  Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion. The list of health concerns that these little ones can have seems endless.  This is why we knew it was so very important to have Alicia under the care of a team of Rett specialists.  
I am also hoping that she can possibly be tested to find out her actual deletion or mutation (when diagnosed with Rett Syndrome, usually it is shown that the MECP2 gene has a mutation, however there are more than 200 different mutations that could be found on that gene).  Believe it or not, just having that test come back positive for that mutation does not prove that a child has Rett Syndrome.  The MECP2 gene mutation also shows up in very well-known disorders such as autism, mental retardation, learning disorders, schizophrenia and bipolar disorder.  
Alicia has been diagnosed with several things since we knew something was wrong before she turned 1 year old.  At first she was diagnosed as severely global developmentally delayed, then autistic and then with Rett Syndrome.  Rett Syndrome is often misdiagnosed as autism, cerebral palsy or non-specific developmental delays.  In order to be diagnosed with Rett Syndrome, not only does the child have to show the gene mutation but also fulfillment of the diagnostic criteria (a clinical diagnosis, based on signs and symptoms that you can observe), which obviously Alicia has.  I would like to know for my own knowledge exactly what is Alicia's deletion/mutation but insurance may not cover that extensive genetic testing and it can get into the thousands in terms of cost.  
So as of right now, I am reading The Rett Syndrome Handbook.  It is an amazing book that has anything and everything about Rett Syndrome.  I am writing my questions down that I want to ask the team.  We are about to embark on a whole new journey yet again. 

Sunday, July 24, 2011

B is for Bike

B is for Bike!!

A few years ago we came to the conclusion that Alicia would never be able to ride a bike without assistance.  Through her PT at school at the time we discusses various options that were out there for her.  I spend hours and days looking online and researching various bike and various styles of all these bikes.  It was quite overwhelming.  I ordered any catalogs that I could get my hands on that had bikes for Alicia.  You need to order a bike that is going to be designed specially for her.  The bike needs to fit height, weight, lenght, width, and many, many more measurements. 
I was speaking with a friend of mine who has a son with Cerebral Palsy.  She had gotten an adaptive tricycle for her son through The Save The Kid Fund, which just happens to be based in CT.  So I figured I would give them a try, what is the worst that can happen, they say no?
So I researched and researched what type of bike we wanted for her.  We knew she needed an adaptive tricycle that would help her to stay seated upright (with the proper restraint system), pedals that would make her bike go that we could manipulate because she can't push the peddles on her own. Leg and feet straps so she could stay securely in the bike and many more things someone with a normal child would never have to give a thought to. 
So we jumped through the needed hoops, got a letter stating that there was a legitimate want/need for Alicia from her PT (physical therapist).  This bike gives Alicia good exercise, especially in her legs that are being forced to pedal.  I believe that this constant leg motion will in the future help her to have a more balanced gait. 
So we were able to get Alicia an adaptive tricycle and the first time we ever put her on it was amazing.  She beamed from ear to ear and just couldn't stop smiling.  She was happy the minute we put her on there.  She was also very patient with us while we were trying to figure out how to properly restrain her in the bike to minimize chance of injury.
The following like is a like to information regarding this charity.  I was checking up on the work they have done since I had worked with them for Alicia's bike and I got quite an amazing surprise.  They used one of the pictures I sent to them of Alicia on her bike and put it up on their website.  This following link will show Alicia, all smiles on her bike!

Friday, July 15, 2011

Another A: A Is For Appreciation

(Yes, this blog is entitled "A to Z" and yet, here I am, writing under another letter "A", but this is what was layed upon my heart....I will get to the other letters eventually...LOL)....
The words "thank you" just sometimes aren't enough.  When I think of all the family and friends who have supported me and my family through the already many difficult times we have had raising a special needs child, "thank you" doesn't even come close.  In my opinion, I have the greatest, most supportive family and friends that a person could ask for.  They are always there, whether it be a listening ear, a shoulder to cry on, a joke to laugh at, a spring board to "bounce" ideas off of, or to just sit and enjoy the silence.  They know when I need to talk and they know when I just need a hug or an encouraging smile.
My family and friends would, and do, many things for me and my family.  I can always count on them for support.  My family and I have been truly blessed!  Thank you all for your constant love and support, I love and appreciate each and every one of you! 

Sunday, July 10, 2011

A: Is For Accomplishment

When you have a child with special needs, sometimes the smallest accomplishments just make a world of difference.  A parent of a child with special needs has a very different definition of what accomplishments are compared to a parent of a "normal" child.  Just this evening Alicia had an accomplishment which in my eyes is MAJOR.  For the past couple of years we and school have been attempting to try to potty train Alicia.  Since she has started at a private program (outplaced from the public school system), we have been more aggressive in our "potty endeavors".  She has a special type of toileting system which thank God her school lets us use at this time.  Unfortunately our insurance does not cover ANY of this cost and it comes in around $1100-$1200.  Yes, you read that figure correctly.  It absolutely appalls me that insurance companies do not cover more adaptive equipment for special needs children, especially what we pay to even have the health insurance in the first place.  As of now, Alicia is on a wait list for a refurbished toileting system, but we have been able to use the one on loan from the school.  It is very difficult to pinpoint the times that Alicia may have a success on the toilet.  We are trying to get a schedule in place since routine is a huge part of our lives with Alicia.  Right now we believe the best times for trying are right when she gets home from school, either right before or right after dinner and right before bedtime.  Well this evening on our attempt right before bedtime, we had success on the toilet!!!!!!  I am such a proud Mommy this evening.  It may not seem a big deal to other people, but this is a small step in a big positive direction.