Tuesday, May 28, 2013

I will be positve, I will be positive, I will be....

I have been reluctant to write this blog for so many reasons.  Mainly because I am trying my hardest to stay positive.  We were informed on May 15th  first on FB and then by our study coordinator that the drug trial (arbaclofen) Hayden has been on for almost two years was abruptly ended because of funding.  The medication that we were told he could be on hopefully until it was approved by the FDA, would no longer be available.  This news shook me to the core.  To say it surprised us and our clinic would be an understatement.   The first few days I was just in shock.  I am sure it helped that I was really sick so I was a little slow in processing it all.

Then I finally did what I didn't want to do.  I looked back at my notes of when we first started taking the actual medication.  "increased verbalization", "Hayden seems calmer", "Hayden can answer my questions consistently" "he's joking with us" "we were able to go to the restaurant without Hayden freaking out" that's what we saw at home.  At school "Hayden is engaging with his peers"  "I can't believe how much he is talking" "He's is understanding concepts better".  I really want to stay positive.  Hayden just knows if I am a mess and if I freak out.  It effects him negatively.  If mom is freaked out then he is.  We just have that connection.

 

Again because I am trying to stay positive we have also seen Hayden at his absolute worst on this medication.  See blogs from the beginning of the school year.  So in my heart I am clinging to the the hope that what was saw was growth more than medication.  Hayden was on a low dose in comparison to some kids.  We often would ask ourselves "what do you think this change is due to?"  "Is it medication or growth"  "Is it the changes we made at school and at home or is it the medication?"  My guess would be a combination. 

We have started the titration process.  We are four days into the coming off the med process.  Hayden has been sick (not medicine related) so the changes I am seeing, I am hoping are because of that and not a lower dose.  What will the next few weeks hold for us?  Will we lose a part of him?  Will we loose the joking, affectionate, silly little man?  Will we loose the little boy who pick on his sister and does silly things just to make us laugh?  I don't know.  I just don't know.  I will figure it out, cause that's my job.

So in just over a week I will reluctantly ship back almost three months worth of medication.  Medication that was that little bit of hope we were clinging to.  At that moment we will then start over.  I am hoping his regression is minimal.  I am praying I know what to do when these chemicals are not longer in his system.  I am praying I know what to do if the regression is more than we are hoping.  I am praying I can help Cynthia to understand if her brother is different some how.

I have been reading so many Fragile X blogs about this subject and my heart breaks for so many families.  Families that on so many levels are our extended family.  Families that I have prayer for, laughed with, cried with and celebrated with during this drug trial.  Families that prayed for us as we started this trial.  I can feel the desperation in their blogs.  I experience the same fears they have right now.  Fear that is now turning to anger and frustration because it seems so unbelievable that the only answer is funding.  What happened a week before when I received 3 months worth of medication?  Or less than a month ago when I breathed a sigh of relief because the extension was approved for one more year.  I thought we were safe for one more year at least.  What Happened in that month?  Did anyone not see this coming?  How could so many families be toyed with this way?   I don't have these answers.   The more I find out the more I don't want to know.

I ask that you keep Hayden and our family in your prayers as we navigate what is to come.  Please pray for all the other families that are effected by this.
 

Love,
Tina



3 comments:

brandonlk said...

I most definitely will! You know what? When I get upset or am having an "off" day Liam does too. ;) I'm sorry that things worked out this way. I sure do hope and pray that things stay as they are.

Cortney AbouElSeoud said...

I have been following your blog for so long..you were the first FX mom I "met" through a blog - even before Ayden's diagnosis. (I'll have to tell you about when I connected you to Mike at advocacy day if he hasn't..duh! moment for me!) I just want to say that I understand and you and all the other families going through this are in my prayers. Especially the kids. We all certainly need as much guidance, patience, and peace as possible right now.

Turtles Mom said...

Thank you ladies so much!