And so it begins

Today was the first official day of titration off of the stx-209. Today was especially hard for so many reasons. Since we are officially lowering it now, it seems so much more real. Don’t get me wrong. What we felt when we first found out about Seaside cancelling the extension, it was very real. The sinking in my stomach, the aching in my heart, very real. But we were still administering the medication like before, life was going on just like it had for the past year and a half. Until today. Logan was just slightly “off” today. Its difficult to pinpoint whats going on with your non-verbal child because they can only help you so far. You get very talented at distinguishing moans and grunts and just the look they give you. We went along with our morning. He didn’t even give me any static about going to see his neurologist today. While we were standing at the desk, I looked over at him and he just looked different, he looked not like himself. I asked him if he felt okay, and didn’t really get a response so I just shook it off as my paranoia.

logan

We go home and everything is fine and then out of nowhere, he comes into the den and throws everything in his hands down, looks at me, hits himself in the head and forms fists with both of his hands. I ask him what happened because usually its triggered by the drain of the ipod battery, or his tv went off or something but he just got worse when I asked. He turned and stomped off to his bedroom, closing his door. I sit and wait and he comes back out. Instant replay. This little dance goes on for an hour or so with him getting angry with me if I speak to him, and angry if I don’t. Finally, I decide enough and go into his room and he tries to push me away. I just put my arms around him and start rubbing his back and scratching his arm and I can feel all the frustration melt away. We stay like that for about half an hour. I ask him if he wants me to go or stay. He pats the bed so I stay. I stay for awhile, and then when I think he is done, I leave the room because he tells me he is better. All I can think is whether or not the incident was brought on by the fact that his dad has been home on vacation all week, or the fact that school has been out for a week, or one set of his grandparents are out of town for the week, or….is it the lower dose ALREADY having an effect?

A little while, it starts back up again and it hits me. It could very well be the lower dose already taking affect. As I go back into his room, and put my arms around him, all I can do is cry and tell him how sorry I am. I am sorry for giving him this stupid defective gene. I am sorry that he isn’t like most other 9 year old boys. I am sorry that just as he thinks his world is opening up, its going to shut right back down again. In that moment, I was even sorry for ever getting him into the study in the first place.

I know, I know. I didn’t know about Fragile X when I had him. I had no way of knowing that the study drug that would work wonders for us, would be taken away because a large pharmaceutical company decided that it wasn’t worth the investment to help out a smaller company. I know I was just trying to give him a better life. I know that I am STILL trying to do that by helping to fight to keep our extension. I know all that. I also thought to myself that I didn’t see how I could possibly put him through it again, EVER. In that moment right there as I could feel how frustrated my sweet boy was, I just wanted to take it all away. It probably didn’t help that I had to leave for work and couldn’t stay to help him sort it out, to help my husband deal with it, and to help explain it a little more to Victoria.

My husband called me later to tell me that he had calmed down and had even laughed and eaten a good dinner. He also called to tell me the UC Davis had called about another research opportunity. I guess when one door closes, another one opens.

A friend of mine today, said that they should have issued some precription strength tranquilizers for the parents to take along with the titration kits and I believe she was right. This is going to be a long, bumpy road and its only supposed to last 14 days from today. I am not sure how we will surface on the other side of this but I do know we will. I know that we are not alone and I have gotten closer to some pretty incredible ladies over the last couple of weeks that keep reminding me of that.

New beginnings. whether I like it or not

515 days (give or take, so sue me, I suck at math, blame FX) have passed since I posted about how excited we were after just one day on Stx-209.  Then, we weren’t even sure what, if anything, Logan was getting but come January, when we began titrating down off the “study” drug, it became quickly evident that he was getting something.

“Titrating” , since May 15, that word has been used at least once a day in my house.  I can’t give you the Websters definition, but in layman’s terms it is the process we are using to wean Logan off of Stx-209, for what we can only assume is for good.

Just 515 days ago, I was so full of hope.  So much promise I had put into this little white pill.  I thought it would change our world, it did.  I thought it would open up my sons world to new possibilities, it did.  Never did I think it would break my heart, but it did.  Even up until May 14, I attributed most of Logan’s new-found successes to Stx-209.  Anyone who knew me, could see how much Logan had grown on it.  I spoke of it daily, I called the newspaper and bragged about it.  It’s hard to say how much was truly just him growing up, or all of the measures we had put into place, or the pill but it was hard to deny something was different.  My 10-year-old niece sat on the couch next to Logan one day, holding his hand, and says “He’s different now.  He’s just different, he plays with me”. I knew then, I had made the right decision to allow him to participate in a drug study.

Wrong or not, I, like so many other families, had put so much hope, probably too much hope, in that little pill.  Never in a million years, did we imagine getting a phone call that said, um, well, we ran out of money, so, no more for you. Thank you, and have a nice day.

I am angry, I am hurt, I am heartbroken not just for me but for all the families that are affected by this. I am hurt for my niece who has this new side of her cousin.  I am hurt for his sister, who now plays with her brother.   I am hurt for the kids in Logan’s class who are now his friends.  I want to scream from the rooftops: it’s already not fair that Logan isn’t like other kids and struggles with so many simple things, to have what we thought, what we hoped, was something that would help make his future a little brighter taken away, just like that.

Just like I did after we got our initial diagnosis, I realized I couldn’t just sit by idly and just let it happen without a fight.  Blame it on being born in Missouri, but I need the “why” and I need to fight back.  I contact the press, use any connections I can find, to make a stink, tell our story.  It may do some good, and it may not but at least I will have tried.  At least by not going away quietly, a few more people are aware of Fragile X.

We started our titration (see 3 times here already!) yesterday, and I am scared yet ready to get it over with. Scared to death because I don’t know whats going to happen.  Will the meltdowns, the REALLY bad ones, come back? Will we lose those oh so precious words we have gained over the last 500 days? Will his friends notice a different Logan when he goes back to school in the fall? Only the Almighty knows the answer so I have to trust in Him.  Some people have asked, and I know other FX families are in the same boat, as to whether or not we will search for another study to participate in.  I just don’t know.  It’s a HUGE decision to subject your child, your flesh and blood, to be a guinea pig. Did I feel some guilt over it? Absolutely!! I am a huge believer in research and I believe that one day, we will have something that will help Logan and all of our other FX families, have the life they deserve.  But, based on my experiences of my past, I have a difficult time putting my trust in someone who has wronged me before.  Am I sorry for doing? Nope not at all.

So, I think for now, we will slowly wean off of the stx-209 and see how it goes.  But I did have to laugh to myself when I got the mail today only to find a letter about a language study being done that is looking for participants.  Our very first venture into the research field was in a language study.  So yeah, it is sort of like a new beginning.  One that I believe, I have to believe, will have a happier ending.  This warrior mama will NOT let Fragile X win this war!

Best of intentions

Wow! How does time really go by so fast! My New Years Resolution LAST year was to do more blogging and knew time had gotten away from me, but seriously, a year??!!! Oy vey!

So we have been in the stx-209 world for a little over a year now and its crazy how different it is.  Logan is saying more words every day, and my mom even mentioned the other day that you could actually carry on a conversation with him now! He is a little more tolerant of change and the unexpected and much more aware of his social circle and for the first time in his 9 years on this earth, he had a REAL birthday party, at Chuck E Cheese no less! Kids and adults both stop me at school and talk to me about Logan and how sweet he is and how funny he is and how much he likes pigs!  He has actually achieved some IEP goals and all the comments say how far he has come.

However, as good as things are, Logan doesn’t get up in the morning and take his pill, suddenly turning into the “typical” child.  We STILL have meltdowns, though they are infrequent, he still doesn’t understand “sharing”, especially with his sister and as far as he has come at school, his last report card came home with UNSATISFACTORY in the CORE subjects of Math, Reading, English. I was okay with it because of all the good things his progress report said.  But, then this weekend  we got a letter from the school saying that he is in danger of not advancing to the next grade.  He is already 9 years old and repeated every grade, so while his typically developing peers are in 3/4 grades, he is still in first and they want to hold him back again?? My heart sinks and as strong as I am at times, I feel a sudden panic and all my insecurities come rolling back in like the tides.  As the parent of a child with special needs, with a disability, I have had to come to the realization that he will probably not be a surgeon, or a lawyer or president one day but one of the things I have stayed true to is that I want him to have an education.  An education is something you earn, something that no one can ever take away from you. But it seems to be one of the things we struggle with.

If only there was a magic pill to fix that!

Out with the old

So hard to believe that another year is gone!  I feel so old saying things like that but this past year has flown by but as I sit back and reflect, I am very happy with where my life has taken me.  What a year its been but my most favorite memory was made tonight, just a little while ago.  For years we have just foregone the fireworks on New Years and Fourth of July both, much to my husband’s dismay.  This year, Victoria showed some interest in fireworks around July so Lance promised her we would get some.  We just figured Logan would stay indoors or I would stay with him.  So we got ready to start and Logan got very excited, jumping around and jabbering all over the place.  A long time ago, we just learned to take things slow where Logan was concernced.  We always at least try and see where it gets us.  Well, I have to say, he certainly surprised us tonight.  He stayed attentive, and watched and participated the whole time.  We did have a small meltdown, but it was because his dad told him we were going to eat dinner then finish the fireworks.  Momma couldnt take it, so I took him back out. It was amazing.  Even the loud ones that made me jump, all he did was cover his ears, then laugh and ask for more.  It made my heart soar to watch my little boy experience true joy. 

We have now been on the drug trial for 3 weeks.  Today is the first day Lance and I both have noticed a big difference.  Its so hard to say whether its the drug or just him growing up. We both noticed today that he appeared more alert and more little boy like, not like a little boy affected by Fragile X.

After the fireworks, 2 of the neighbor kids came over and Logan and Victoria went in the front yard and played.  Logan played! He even played Duck Duck Goose.  He knew how to play and when it was his turn to be it, he put his hand on one of the boys head and said “goose”.

Sometimes, I feel like we are searching so hard and wishing so hard for those “perfect” moments, those “normal” moments in our lives and I realize that they are always right there in front of us. 

One of my 2012 Resolutions is never ever take a single thing, or a single day for granted when it comes to my kids. 

I hope everyone has a Happy New Year and I for one, am looking forward to the New Year and all the promise that it holds.  I am not an optimist by nature, but I could find myself becoming one!

 

 

 

bright future

stx-209 is officially a part of my life.  No, I am not the owner of a bright shiny expensive foreign car. Stx-209 is a little white pill that is gone in an instant as soon as my son put its on his tongue, but hold so many hopes and dreams in its shape and design.

Many in the Fragile X community will immediately know and understand the importance of it.  I am not quiet or ashamed of our FX label and many people at my work and anyone who knows me, knows its a part of my life, it makes me who I am, its in my genes! But to the many that dont live it everyday, its difficult to explain how much hope I have in this tiny white pill that I have agreed to let my son be the guniea pig for.  The pill is not yet FDA approved, but is in the third phase so its getting further and further along in the testing phase and we are happy to help.

I worked 7am to 4 on Wednesday, hurried home, grabbed my clothes and my son and my dad and hit the road driving roughly 320 miles to the west to just SEE if we even had a chance to take this drug.  I cant describe the feeling I had when I gave my son the first pill.  Now, we dont know if he is even getting any dosage or how much or anything, its just a chance but its one I am willing to take. My mind flashes to those pictures of his future that I saw disappear in front of my eyes the day we got our diagnosis.  I dont want to get our hopes up yet.  I am a half empty glass kind of girl

Am I scared? You bet.  Do I feel a little bit of guilt over what he has to go through to even get tested? Absolutely! But show me any mother who doesnt have guilt where her children are concerned.

So far, we (and I use that term because I truly believe he and I are in this together) have had 3 doses of this “magical” pill.  Do I see changes? Too soon to tell but I am on the edge of my seat to find out.  I truly hope that all of this that I am putting him through, that one day he will understand why I am doing it.  Some of my reasons may be selfish but I think any deed that we do for others is always selfish in some sense because we are doing it to make ourselves feel good.

So my hopes are that by subjecting him to this test, we not only make his life easier but others as well.

His future is so bright, I may have to wear shades!

 

 

 

Normalcy achieved?

Got home from work today and saw something that made just made me super happy.  For the last couple of weeks, it seems as if all the neighboring kids have emerged from their shells.  The beautiful thing is that our house is one of the 5 that they are frequenting.  As I watched these 7, sometimes 8, kids that range in age from 4-10 playing together, I flash back to my days of growing up  with my friends from the neighborhood playing from sunup to sunset.  There was a group of about 5-8 of us that spent many hours playing in the streets, playing in the fields and the ditches behind our houses, and playing in backyards.  Our parents didnt seem to worry much about us, and you always seemed to be able to hear your mom call you home for dinner.  I often lament about how times have changed but when I pulled into my driveway today and saw this group of kids playing together, just being kids, I realized that maybe those times arent over.  I love to watch these kids because to them, it doesnt matter the age difference, the racial difference or the fact that one of them is almost non-verbal, they are just kids, having fun.  Its one of the things that my husband and I agree on for BOTH kids.  We want them to have a normal childhood, and experience the things we did and even some of the things we didnt get to experience.

Then comes the knock on the door from one of the kids, that tells us that while they were roughhousing, and playing around, Logan took it a little too far and hit one of the other kids inthe head with the chair.  We pause the football game we are watching and I sigh, oh well, those beautiful “normal” moments in parenting are what I long for!

Hello world!

Okay, so here I go! Been pondering for a while to start a blog and here it is.  So, now what?

So had a really great day today.  Got our call from the Fragile X Clinic in Houston and we have an appointment in November.  I can hardly wait! To be able to sit down with someone who knows about Fragile X is something I have been wanting since we got our diagnosis almost 5 years ago.  So after the initial excitement comes the anxiety.  How is Logan going to do on the 5 hour drive to Houston and then in an unfamiliar place and unfamiliar people? Is it going to tramatic for him? for us?  I am at least somewhat comforted by the idea that we will be going some place that has seen other kids with fx so if we have a meltdown, no big deal! At least Logan is good traveller.  Well, he is when it’s just he and I.  For some strange reason when we travel as a family, both kids feel the need to act up.  It’s like they are fighting for attention of both my husband and myself.  I guess in that respect, they are like typical kids. I guess that is one of those tiny glimpses of normalcy that creep in every once in a while!