Little Miss "Tia"!

I am excited to update on my Little Miss "Tia"

(as her baby sister has affectionately named her - a.k.a Taleigha).

I know that my last post in September wasn't a very positive one to leave off on.  After posting that one, I realized that I really needed to pick myself up off the ground a bit.  I had found myself struggling again with the acceptance of our situation, but I also know that it is normal to do so.  This journey that I am on... being a parent to a beautiful and amazing, and also special needs daughter is not easy, but it's worth it!!

IT'S WORTH IT!  Every single minute!

Just like a million times before, Taleigha has been able to completely stop me in my tracks because of things that she does!  She has become much more vocal over the past several months, which I believe is a combination of starting her first school year and having classroom time, as well as Taelyn talking a blue streak!!!  If she can't find the way to vocally communicate her needs, she has been able to "lead" Mommy and Daddy to what it is that she wants or needs.  She's starting to figure out new ways of communicating every day, and for that I am so grateful.  Her determination and strength hasn't wavered one bit since she came into my life, and I look up to her in so many ways because of it.  We still struggle daily because of the communication barriers yet, but to see the tiniest of improvement goes a long way in keeping hope.  We did also get Taleigha an app for her iPad to use for communication, however, we are still in the process of getting it all set up (customized), and we know that there is going to be a learning component for her that will take a lot of time and patience for us all.

I have been fighting for a few different things for Taleigha lately.  One of which is Sensory centered Occupational Therapy.  We FINALLY were approved and able to get in for an evaluation with someone about a month ago, and as I suspected for so long now, the therapist agreed that Taleigha is struggling with some sort of sensory issue.  She started and had her first session today.  I am anxious to see what outcome we will have with these sessions, if any.  I was very pleased with the appointment today, and thought that Taleigha did quite well!  The other thing I have been really fighting for is to have an eval with a Pediatric Neurologist.  I guess I don't really even know why I feel so strongly about having Taleigha see this specialist, but I just feel like maybe it could be of some help in some way.  It's worth a shot.  Regardless, whatever the outcome of that, I would feel better knowing that someone did do an evaluation, to make sure that nothing is going on that we don't already know about.

I have been doing a lot of research on different resources that may be available to us in our county.  I was able to get connected with a service coordinator that should be coming out to our home in the very near future to also help us get more information on available resources and guide us through.  I actually did find a lot of things that I didn't even know existed that were available, for example: HealthCheck Other Services (HCOS), Family Support Program and Children's Long Term Support Waivers, Diaper Supply Assistance, etc.  I was able to find a lot of this information through Family Voices of Wisconsin!  Anyway - I'm pretty excited that I was able to find this info!

We are currently in the process of trying to get Taleigha a walker.  For the most part, Taleigha is doing a great job walking, but she does struggle with stability and longer distances really seem to take a toll on her.  Her physical therapist, along with Clint and I, feel that giving her a walker would only benefit her based on those struggles.  She has been using a walker in school, however does not use it all of the time, as she does not need it within the classroom, but does use it when walking the hall or in the gym etc.  She would not need to use it full time at home either.  We wouldn't have her use it within the house, but feel it would really help with shopping trips, doctor appointments, or even just going for family walks, and other things of that nature.  We are just waiting on the therapist and doctor letters of justification before we can proceed further with this.

We have a lot of different things in motion for Tia right now, and am very hopeful for the near future!  Can't wait to update further.  For right now though... This Mommy needs to get some sleep!

I AM BACK!!... For real this time! ;)

First of all, I sincerely apologize for the lack of writing over the course of the past seven months or so (still hard to believe that time can pass so quickly).  Life took quite the interesting turn back in September of 2012 and meant that a lot of focus was needed on family.  Since then, my family and I have been on quite the roller-coaster ride (which I am actually getting used to now... life being one unexpected roller-coaster after another).  I really have missed blogging, though, and am going to be making a strong effort to begin keeping up with it once more, since it is kind of therapeutic for me to do so! ;)  Prepare yourself, as this post may be lengthy!! Ha.

Like I said, a lot has been happening lately.  I will start off with sharing a little about what has been going on with me.  I have struggled with health issues for quite some time now (years, in fact) that doctors were unable to make sense of... until recently.  I have always been a very active, non-stop, on the go type of a person, but after having my two girls, it seemed things had really changed for me.  I am young, and yet, I began having a difficult time standing up for long periods of time... I was feeling winded after climbing a flight of stairs or walking from one room to another.  I was feeling light headed and dizzy so often that it made it difficult to do everyday things.  I was tired and fatigued.  I was also beginning to have frequent episodes of fainting.  It was horrible, and I felt like my body was completely falling apart.  I was seeking an answer for all of these things.  Unfortunately, every doctor that I had seen told me that it was just anxiety, or that it was just all in my head; that I was a healthy young woman.  The worst comment of all, though, was that I was "just faking it for attention".  I KNEW that none of those things were true.  Yes, my life after Taleigha was born was difficult!  I will admit that.  But anxious!?  No.  In my head?  No.  And you better believe the faking it had a big fat NO after that too.  I felt like I began to "doctor shop" until I could find someone that would give me the kind of time, care, and compassion that I deserved.  I needed an answer!!!

I finally found a doctor that really heard me out.  He took notes and was willing to do whatever it took to help me find the cause of all of my weird, and progressing, symptoms.  After a lot of time and the right testing being done, we were finally able to pinpoint what was actually going on with me.  I was diagnosed with Postural Orthostatic Tachycardia Syndrome (or POTS for short).  It is in the Dysautonomia family.  Dysautonomia literally means the dysfunction of your autonomic nervous system.  Your autonomic nervous system controls all of the things that your body does subconsciously (heart rate, blood pressure, temperature, digestive tract, respirations etc).  Sometimes, your autonomic nervous system can become dysfunctional after a severe trauma, major surgery, or even childbirth.  Unfortunately for me, after having the girls and having major surgery and suffering from a mini-stroke, my body took a turn down this "dysfunctional" road.  A POTS diagnosis was given because when I make any attempt to change body position (sitting to standing), my body doesn't regulate blood flow properly and it causes my heart rate to increase significantly.  My blood pressure is also affected and drops significantly, which causes the fainting episodes.  Major symptoms I experience on a DAILY basis are: tachycardia upon standing, low blood pressure, shortness of breath, weakness, lightheadedness and dizziness, extreme fatigue, migraine headaches, blood pooling in limbs, fainting, severe intolerance to heat, and digestive challenges.  I feel pretty good while I am off of my feet (so if I could sit or lay down all day, I'd be peachy!  Haha!  But with two young girls, we all know that is impossible)!  It literally makes every day life a challenge at this point.  There is no cure, however, there are treatments that can help.  I have trialed different medications, none of which helped.  I am currently trialing a beta-blocker, hoping to help control my heart rate issues.  I am also currently trying to get an appointment at the Mayo Clinic in Rochester, MN.  There is a 9 month wait list for POTS patients.

I am trying my hardest to stay positive about all of this.  The hardest part for me is feeling like I haven't been able to be the kind of Mommy I hoped and dreamed I would be in so many ways.  I have to sit often, and can't run around and play as much I as want to... I have such a hard time even moving some days, that getting lunch for all of us can seem like a huge chore... let alone doing anything fun with the girls!!!  Some days, I struggle just to get out of bed!  I know that I give both of my girls a ton of love and attention in all the ways that I can, and I know that is the most important.  I'm just hoping that someone can find SOMETHING to help out with some of these symptoms so that I can get the quality of life that I really yearn for!!!

For more information on Dysautonomia and POTS:

http://www.dinet.org/index.htm

http://www.youtube.com/watch?v=iJ9bv7jx-Ls

http://www.youtube.com/watch?feature=player_embedded&v=8UPMYNkm6Bc