We can’t send her to daycare.  She has too many “issues” that would not make it safe for her to be there nor would we probably be able to have her in a regular daycare.  There are no “special needs” daycares near us, as we found out the nearest two are 2 hours and almost 4 hours away from us. 

So we are limited in our options. 

I took advantage of trying out a free MyGym class Monday afternoon to see how she would do in it.  The class was for the 7mo to 13mo babies.  There were only two little boys in there, about 7mo and 10mo.  They were so incredibly active — one was crawling all over the place, the other was waddling around.   They were throwing things, crawling up on things, going in and out of tubes. 

Hannah just sat there, holding a little ball in her hand.

As I was sitting there trying to help Hannah get to her knees just to get into a crawling position, I saw the other two moms look at me with that look of confusion on their faces.  They were very sympathetic, but it seemed to me they were looking for an explanation (I probably would too).  So I shared that she has some delays.  From that moment on, you could see the friendly pity in their faces, which even though they were incredibly sweet, it just made me uncomfortable since Hannah couldn’t do most of what the two boys were doing.

It just wasn’t right for Hannah.

After talking to my neighbor, we are going to check out Kindermusic.  Perhaps something not so focused on the physical would be a better social situation for Hannah to start with.   We are going to try out their free class on Thursday morning.  This class is geared for newborns to 18 months, so I think this larger age range would give us more flexibility as well. 

We will see how that works out!

You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!) or join our Hope for Our Hannah Facebook cause.

The ENT did a laryngoscopy and found that Hannah had vocal cord paralysis.  She would most likely requre a tracheostomy in the new few weeks to months. 

The thought of this is killing me.

I have been soul searching and trying to figure out why this probably tracheostomy need is eating at me.  After talking to a couple of friends and reading thoughts from other moms who have gone through this, I know what it is.

Denial is a beautiful thing.  I remember at the Texas Parent 2 Parent conference's grief session, the woman running the session commented how being able to be in denial at times just makes everything else survivable. 

Right now, Hannah is a medical-equipment-free special needs child.   With the exception of her braces, which honestly I consider such a benign piece of equipment, no one looking at her would know that she is affected by this horrible fatal disease.    She just looks like any other beautiful baby girl you would see on the street.   No one really sees a special needs child.

Even more so, *I* get to feel like she is any other beautiful baby girl on the street.  The way she acts, smiles, rolls over to find me, etc., she is just like any other child.   I get to live in denial for many hours a day that anything is wrong with her or very minor things that are wrong.   For those many hours, I don't feel like I have a child who may only be with me a few more months to a few years.

However, having to put in a tracheostomy will kill my freedom of being able to be in denial about what is happening to her.  It will be a constant visual reminder every moment of every day that she is losing this battle with Gaucher's disease, that this disease is affecting her more and more.  

As long as she is without the trach, I feel that there is still the possibility that something may come up to save her life, that I will find something or  someone to help her, something to stop or even reverse the damange this disease has caused.  

It is almost as if this trach is the "fine line" between hope and loss.   It is also as if this trach is the "reality check" that we have to face with sharing with Abigail and Ethan about how serious Hannah's condition is because they don't know of any other child with a trach. 

I know that I will get used to the physical act of taking care of her with the trach, I know that.  I know that the trach will improve her quality of life since she is still learning new skills and still is an active and coherent child.   

I need to be able to continue to have my many hours a day of denial right now.  I'm not stupid, I know what the future will hold, which is why I need as much "denial time" now to really allow the freedom of having a somewhat normal family for Ethan and Abby and even ourselves.  

Because once we are no longer able to live in denial about this, I am afraid of falling apart and losing it.    I mean, seriously losing it.  I just can't afford to do that.

So, that is what it is.   I so don't want to be faced with having to do this.   I'm so scared about the emotional fallout from myself, my husband, my kids, and our families and friends once we have to cross that line.

You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!) or join our Hope for Our Hannah Facebook cause.

We made a very strong point never to say she is "sick" but that she has a "disease."  We don't want them to connect being "sick" with always having a serious outcome.

Because Ethan is older, we have able to get more in depth with the situation.  For example, there is a boy in his school with physical special needs (including a wheelchair and constant assistant).  We were talking about him the other day, and I made the comment that "you know, Hannah will be a "special needs" child too."  That led to a discussion about her developmental delays and orthotics.  He had never put two and two together before, but this was a good discussion into it.  He made the comment, however, that "Hannah doesn't look like she has special needs."  After explaining to him that special needs is more than just a physical thing, I think he has a better idea of the situation.  Fortunately with him, we had the discussion, he asked questions, and we have moved on.  At least that door is open now.

With Abigail, we talk about her disease causing problems with her eyes and making it harder for her to learn to walk, eat, and crawl.  Abby knows that Hannah has lots of doctors appointments, but we just say they are trying to help her.   That seems to work for her.

One step at a time.  The discussions are now out there in the open, and as time goes on, we will keep sharing more information as it becomes necessary.

You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!) or join our Hope for Our Hannah Facebook cause.

When I mentioned a few days ago that I raise Hannah differently than I do Abby and Ethan, a mom of 4 kids was "disgusted" with me and felt horrible for Hannah having me as a mom.  She felt that by not planning for Hannah's future like we do with Ethan and Abigail that I was "giving up" on my child.

I admit I don't plan for Hannah's future when it comes to going to school, getting a job, or falling in love and getting married some day.  I don't even let myself plan for her to go to the elementary school that Abigail and Ethan go to.  I don't stress about Hannah not hitting the milestones that she should at "that appropriate age and timeline" because it isn't important to me.   If I start letting myself think about it, I get incredibly angry, depressed, and sad.

Unless we can find a treatment for Hannah's disease, there is a strong chance she may not make it to elementary school.  If, by the grace of God, she does make it to elementary school, will she be in any physical or mental condition to go to regular elementary school?   We know what the future holds if we can't find something — tracheotostomy, feeding tubes, seizures, and just a horrible, horrible … I don't even want to describe it.

Hell, I'm scared to death that she is not going to make it to her second birthday! 

As parents, our role is to love and prepare our children for their lives as adults.  Teaching them responsibility, individuality, community, etc.   With Abby and Ethan, we do this every day and every moment.  We talk about the future — schools, colleges, their careers (right now Ethan wants to be an architech or actor and Abigail wants to be a singer or doctor).  We teach them how to do things on their own, and we try to motivate them to reach for the stars.  There is no limit for them.

Hannah, as of right now, is very limited.  She wasn't given the gift of a healthy life.  She was given an incredibly cruel, debilitating, painful, and extremely rare disease with not even a treatment.  A disease that threatens to take her away from us when she is just a baby.

So, if she wants to fall asleep cuddled next to me every night and naptime instead of learning to fall asleep by herself in her crib, so be it.  If she wants to not practice solid food eating after 2 minutes of trying, so be it.  If she wants mommy every single minute which may take me away from household chores, so be it.  Hannah gets what Hannah wants, right then, right there. 

We continue with all her therapies because we want her to improve as much as she can before it is taken away.  For most people, therapy is a means to learn skills to adjust to the future.  Therapy, for us, is solely for us to have Hannah learn as much as she can before it can be taken away by the neurodegenerative brain portion of this disease.  The more skills Hannah can learn now in terms of physical, occupational, and speech therapy, the longer it will take to lose them, and the longer we can keep her with us in hopes of finding a treatment.

If Hannah's condition changes, and God I hope it does, then we will start teaching her to fall asleep by herself, etc.  It will be harder to do at an older age than it would at this age, but heck, I will take on that role in a heartbeat!  I would absolutely deal with cries and tears because she is made she has to sleep alone to fall asleep if that meant she would be able to be here with us for a longer time.

My husband and I both agree that our role as parents for Hannah is to keep her happy and keep her comfortable (and to leave no stone unturned in trying to find a treatment).  That's it.  We aren't going to plan for her future, because when the truth stares in our face, it breaks our heart.  We don't want to plan for THAT future.  Unfortunately, that is the future that this disease brings. 

So yes, we will continue to raise Hannah differently than Abigail and Ethan.  In our hearts, we would love to raise them the same.  Reality isn't giving us that option.

You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!) or join our Hope for Our Hannah Facebook cause.

Throughout this journey with Hannah, I have also met some wonderful people. Some who have become partners in our fight, some who have offered an ear and a hug, and some whom I admire not only their dedication to their own fights for their children but the willingness they are to open their hearts to me.

One such woman, Nicole, I was "introduced" online to back in December. It was just a few weeks before her little boy, Greyson, passed away from Krabbes disease, another lysosomal storage disease (like Gaucher's). What is even more heartbreaking than the fact this gorgeous little boy wasn't even given a chance to reach his first birthday was the fact that his death SHOULD have been prevented.

Krabbes disease is one of those devastating disease that, if tested during the newborn screening process and found early, can be treated. TREATED! There is a treatment for this disease! But here in Texas, Krabbes disease was not one of the 29 diseases they test for here.

That is very close to changing. Nicole and her family have worked incredibly hard these past four months championing a change in Texas law for the newborn screening process to include not only Krabbes disease but 40+ other diseases rather than the 20 or so they used to test for. It passed the senate, and today, it passed the house committtee!

WHAT does this have to do with this cute little bear??

Today, I had the priviledge of meeting with Nicole, Greyson's mom, today at our local mall. We have been in support of each other's journeys and fights since right before Grey passed away. Ethan and Abigail had playdates, so it was just me and Hannah. We met at Build-A-Bear, a favorite place of Nicole's.

She asked if it would be okay to for her to make a bear for Hannah. Of course! So, she took Hannah, and the two of them, along with Nicole's good friend, looked around the store for the perfect bear. They chose this really adorable collectible bear with a collectible pin.

Nicole named the bear "Hope," the bear she made for Hannah in honor and memory of her son Greyson. She kept the collectible pin, as I told her that from now on, she and Hannah are now connected forever.

And how did this little bear named "Hope" make history today? Greyson's law was one step closer to become a reality today, this afternoon after the House committee approved it. Greyson's legacy will not only live on in saving the lives of countless Texas children once this bill is written into law, but Greyson's legacy also lives on in our fight to save Hannah's life.

It is almost as if little Greyson, thanks to his mom, is fighting for Hannah too. And this little bear named "Hope" is our reminder that Hannah has little Greyson watching over her.

You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!) or join our Hope for Our Hannah Facebook cause.

What this means for us is that we have no previous patient history to go by to have an idea of what to expect with this disease such as how quickly it will progress, the extent of the neurological decline, etc.  We are basically a clean slate with no expectations at this point.  In a way, it is not such a bad thing.

This revelation has really opened up the eyes of a few Gaucher specialists around the world including the National Institute of Health (NIH) in Bethesda, the leading research facility in the US.  The head of the Gaucher's department called me and invited us to bring Hannah there to be evaluted (they would cover all expenses including medical and travel).

It was a very exciting prospect for us.  Not only would it give us some more insight into Hannah's disease, pick the brain of another of the leading experts of this disease (Hannah's current neurologic actually was the head of this program at NIH for many years but left last year), and give the researchers some possibly new insight into this horrible disease.

However, we seemed to have hit a snag now.  We are now at the fine line which we have to decide how much we are willing to poke and prod Hannah for them to learn and get their information.  There are so many different procedures they want to do, but WE have to decide how much we are willing to let them do to her.  There is talk of an EEG, EKG, brain MRI, BAER, audio evaluation, neuroopthalmology evaluation, swallowing evaluation, and more that I just can't think of right now.

It is a tough position to be in.  She is just a baby, only almost 9 months old.  She has already gone through so much in her short life.   How much should we electively put her through in order to find out more? 

I have a call in to our neurologist.  He worked there for many years, so hopefully he can give us some insight into what would be helpful and what would be safe.

I'm her mom.  I'm supposed to take care of her and protect her and not cause her pain or suffering, even if it is only momentary. 

You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!) or join our Hope for Our Hannah Facebook cause.

We have known for a few months now that our 8-month-old Hannah has this neurodegenerative brain disease that was likely going to take her away from us in a few years.  We know what the symptoms are, we know the process it is going to take…we know all of that.  We know she is considered "special needs."

For whatever reason, it never really hit me that I had a truly "special needs" child until a few days ago. 

We know that Hannah has “abnormal eye movements” with her supranuclear gaze palsy and lack of saccadic eye movements (ability to follow rapid eye movements).   Not even going to bi-weekly IV enzyme replacement therapy, multiple doctor visits, and many procedures really made a dent in my brain about this for whatever reason.  Denial?  Probably.

But a few days ago, I really got to experience how the “lack of ability” (I’m not comfortable with “disability” yet) really affects her. 

We bought this toy a couple of weeks ago.  Basically, the three animals go down the curling slide with music.  We thought it would be a fun toy because she loves placing things on other things. 

However, we realized that when we put the toy on the top and let it go down the slide, her eyes stay stuck at the top, and she can’t watch the toy go down the slide because it is too fast for her.  If we do it by hand, very slowly, she will watch it go down.  But if we just let it go down by itself from the top, she can’t follow it.

How many things is she going to miss out on because she can’t follow something?   There are so many things that move faster than slower in life.  Watching or playing sports, so many different toys where things “fall down”, even playing rolling the ball when she is a bit older. 

Don't know why it took this long to hit, but now I am beginning to see how this disease is going to affect her brain.  This is just the beginning, and I have to accept the fact that it will never get better, only worse.  Sucks.  Really sucks.

You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!)

However, it wasn't until we met with her first genetics doctor that we realized the possible gravity of her condition.  He had mentioned taking a skin biopsy to test for lysosomal storage diseases, specifically Gaucher's Disease and Niemann Pick type C.  We didn't think it was Gaucher's Disease at first because one of her initial tests showed her only as a carrier and with a moderately low enzyme activity level (not severely low).  We later learned this test was wrong.

However, since November 12th, the day of the skin biopsy, I have been researching and trying to find information on Hannah's disease possibilities nonstop.  Not a day had gone by where I didn't spend most of the night looking up something.  Google should have been my homepage!  I will admit, there were days I became almost obsessive about trying to find something out there that would cure my daughter.

The most difficult part of all of this is that her disease, Gaucher's Disease type 2 or type 3, is so incredibly rare.  There are no mailing lists or community boards for this disease.  I've only been able to find about a dozen families in the U.S. with children with this disease, of which only 5 children are still living with it.  There is a research foundation for this disease, but it is so horribly difficult to get in contact with him — I have been trying for almost a month to see how active they really are!

It is a very lonely life, fighting a very rare disease like this.  

So, I have resorted to creating my own support system.   Not just with the handful of GD2 and GD3 families that I have been able to find, but with others as well from similar storage diseases.  Even though the disease process may be completely different, the feelings and some of the symptoms are very similar.  Since blogging about our fight, I have met so many wonderful and supportive people out there, most who have no experience with rare diseases, but have been there for me when I needed to share.

I'm not giving up though.  Even though Hannah may have an incredibly rare disease, creating awareness for her disease and sharing her story is bringing so many wonderful people to our fight for her life.  

Look at her face.  She is worth every effort!

You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!)