Fist day of School and a confession.

Summer is over!  I am only slightly sad about this.  I know I am the worst mother in the whole wide world, I'll accept the label.  Don't get me wrong I am saddened by the fact that I now have a 3rd grader (What???) and a P-Kindergartener for the last time.  Next year she goes to Kindergarten...sigh.  But man am I happy I get three hours of ME time.  Like I said the worst mother EVAH.  This summer was brutal.  I am exhausted!!  They drained me these last 3 months.  I need some time to recoup and get healthy again so I can once again be super mom.   Being with my two very different personality children 24/7 for the last 3 months has taken its toll.  There were some days I'm not sure I brushed my teeth.  Days without a shower.  I think for the first time ever I agreed wholeheartedly with Mike's philosophy of "pool clean".  Up until this summer that whole notion was absolutely outrageous not to mention disgusting to me.  This summer it became my survival tactic.  This summer I did the sniff test.  Nope we don't smell too bad  and we don't look like pig pen so lets go to Target.  I am not proud but I will admit that I locked myself in the closet at one point this summer with a magazine and a bag of Dove mint chocolates while I listened for 15 minutes to my freaking out children not being able to find me.  Ok that's not entirely true I listened to Cynthia freaking out and Hayden helping himself to whatever he could find in the cupboards and fridge.  I. DID. NOT. CARE.

Part of my brutal summer had to do with me.  I just didn't feel right.  For the first time ever I was hit smack in the face with the fact that I am a Fragile X carrier and now have issues associated with it.  I always considered myself lucky.  I am not brutally shy, I don't have anxiety issues.  I don't have issues I needed to medication for.  Well...that was until I turned 37.   What the heck happens at 37 that your whole body goes berserk?

I mean you should get a memo that says warning turning 37 may cause weight gain that you will not be able to get rid of, loss of memory,  adult acne,  fibromyalgia, night sweats, irritability, depression, cryonic fatigue syndrome and complete loss of patience.  Warning: being alone with your children for three months straight may increase these symptoms.  Use extreme caution around mother's who unlike you seem to have it all together, this may cause a complete emotional break down. 

I would have be prepared had I gotten the memo.  Where was the memo?   What has happened to me???  I don't want to be around me, I am a mess and it's sure not a hot one.  Unless of course I am having a hot flash then by all means I am a hot mess. So I prayed for the summer to end because I could no longer guarantee the safety of children.

So Today I sent my beautiful children back to school and prayed they'd have a wonderful day.  A wonderful day with calm, patient and sane adults. 

Cynthia my child that asks "what are we doing today" before her head even leaves the pillow, was extremely excited to go back to school.  This girl had ran circles around both me and Hayden all summer.  Hayden my child who is perfectly content with just sitting and seeing what the day brings, was not so excited to go back.  I worry more about him than her.  The first few weeks of school can be brutal for him.  He always has a rough time adjusting.  I was especially worried with the new medication we are trying.  It makes him sleepy and a bit sick to his stomach.  To my amazement they both had a great day!!!  Let's be honest they were probably happy to just be around adults who heads didn't spin around 360 degrees.

All of that said we made some great memories this summer. 

I hope all the kids who went back to school already this year had a great first day!  Now here are some pics of my babies first day to prove to you that they are still alive and healthy!

Yep that's Mr. Not looking at the camera and Miss Attitude

   

Makris Holiday Rooooaaaad trip...Part 2

Michigan will always be home..no matter where we end up, how far away we travel,  Michigan will always be home.  It will always have a piece of my heart and little piece always breaks every time we leave.  Do I understand why we are here in Texas?  Absolutely, and deep down I know it is a blessing that we are here.  It was the best choice for our family.  All that said there is not a moment that goes by that I don't wish I could spend more time with family and friends in Michigan.  I must admit though I am not sure I ever want to do harsh winters again!  I do miss the mild summer's though.

We went home for "vacation" like we do every year.  I was a little nervous going home this year because I had no idea how Hayden would be.  He was off the medication and having a really difficult time with transitions.  It could have been a really ugly situation if he had a rough transistion to the craziness.  We do our best to try and keep things as normal and as routine as possible but it's hard to do.  When we got there He definitely needed his few minutes of quiet (which means sitting on my moms rocking chair and relaxing) but once that happened within minutes of his cousins arriving they were off and playing and never stopped.  One of the things that breaks my heart the most is knowing my kids may not grow up with their cousins.  That's one of the things both Mike and I had the luxury of doing and I always thought my kids would too.  I wonder though would they have as much fun if they saw each other all the time? 

My grandmother was diagnosed with alztimers this year and watching her decline has been so painful.  What an ugly disease that is.  My biggest fear is the day I go home and she has no idea who I am.  Luckily that wasn't this trip.  She may not remember that I moved away or the little things like that but she remembers me and she knows I was the first born grandchild.  We got to see all of our grandmother's this trip what a blessing that is. 

We had a so much fun.  We got to spend so much time with our family.  So many of our friends took time out to come and visit.  I would like to let everyone know that both Cynthia and Hayden  are wondering when our family will come and visit us....Just saying.   

 It's pretty cool when your aunt and uncle have a pool!

 This all started out pretty innocent and turned into one wild water fight

 Cynthia asked Nonnie to save her some snow and she did!  What do you do with snow in July?  You make a snowman of course!

Getting to hang out with Papa is always fun!

We got together to get family pictures taken.  Love that I have these memories preserved.

Ice Cream truck the kids thought this was pretty amazing!

We let a paper lantern go at GAC and GUS's.  Just like in Rapunzel!

Hanging out with more cousins and the kids first time on a slip and slide!

Grandma Alma and Aunt Kathie stopped by to visit.

As you can see we had a lot of fun and adventure packed into two weeks of vacation.  The kids keep asking when we are going back and why we can't see everyone all the time.  Thank you to everyone who took time out to come and see us.  We love you guys and we'll see you next year.  Only this time we arriving by plane!!!

Love,

Tina

 

Makris Holiday Rooooaaaaddd...trip! Part 1

 Well its no secret road trips are not my favorite thing in the world.  I rank them just above dealing with a child who has to make number 2 on a vacant stretch of road (why does this happen to us) and hearing "are we there yet" for the 1,582 time while not even out of the state of Texas yet.  I lost again because I  seriously LOVE my husband... blah, blah...blah.   He talked me into another road trip. A loooong road trip.  We drove home to visit our family and friends.  We made a few stops on the way.  Indianapolis Motor Speedway was one of our stops.  Hayden is going to love this a race track, I can't wait to see his face...are some of things that were said prior to making our reservations.  What thanks did we get from our slightly spoiled little Nascar redneck as he looked onto the track from the suite "It's boring, no cars".  That's right folks we are raising an elite Nascar redneck.  We made him complete the tour without cars on the track.  We are so mean like that.

 We conducted interviews

 Of course we made it to victory circle..we're the Makris family

We kissed the bricks.  The germaphobe in me got over it.  The germaphope in Hayden couldn't.

Our kids Love hotels.  Hayden especially LOVES hotels.  He asks to go to a hotel often.  I find this really crazy with his sensory and transitions issues he has.  He adores them that's part of the reason I can't win the "let's go on a road trip" speech.

What, doesn't everybody sit in a hotel window with their Ipad while watching the cars go by on the express way?  No, well everyone should its really the bomb and it takes your sister forever to figure out where you are.

Nope she is not awake its a figment of your imagination.

One of the reasons I actually agreed to go on this road trip instead of flying was so we could stop and see my family in Tennessee on the way home.  I haven't seen most of them in years and it was so awesome to spend even a little time with them.  They got to meet Cynthia for the first time. We also got to have lunch with a great friend and his lovely family while driving through Indiana.

And of course we had to stop in and see the duck commander warehouse.

She insisted I take her picture by Phil but she didn't want to stand by him alone, He scared her.  I don't get it either.

All in all it was a great road trip.  I went through 1 package of wipes, 2 boxes of tissues, and pulled out the kiddy potty only once on the side of the road, thank you to all the friendly cars passing by who honked at us.  I am convinced that Hayden does it on purpose...I mean really what little boy doesn't dream of doing his business on the the side of the road in a pink princess potty while mack trucks honk at you?  We aim to please little man, you are welcome.  

We traveled through 10 states, saw people and places we would never have seen otherwise, battled a flock of naughty chickens and had a lot of laughs.  Most important we spent some much needed quality time as a family.  What could be better than that? 

Love

Tina

Part 2: Michigan (coming soon)

Our Baby Girl Is 4!!

Wow that year went fast.  I am amazed at how far she has come.  Our fire cracker little girl celebrates her birthday on the 4th of July.  Poor thing didn't even see fire works this year because we were in the car on the way to Michigan.  (That blog post to come) Don't feel too bad for her though she does get two parties.  One here in Texas and one in Michigan.  Last year in her birthday blog post I couldn't show you her picture this year I can!!

Dear Cynthia Diane on your 4th birthday,
You are such an amazing little girl.  You came into our life not that long ago, yet I feel like I'd known you forever.  You just felt like mine from day one.  You will be mine forever and all the days.  You are so easy to love.  Your smile lights up my every day and your laugh warms my heart.  You are non stop fun and energy. I love how curious you are.  I love how you always want to hold my hand and cuddle with me.  I hope that you want to do those things forever.  You've come a long way this year little one.  Talking up a storm and them some.  You've finally hit a spot on the growth charts at the doctor.  You love broccoli...I swear you do.  You love cupcakes of any kind.  I can't imagine why.  You are princess obsessed.    You along with your brother are my whole world.  My goal for the rest of your life is for you to know how loved, wanted and protected you are.  My goal is to make you never feel alone or afraid again.  I love you so much and can't wait to see what this year brings for you.  Whatever it is I am sure it will be exciting and fun.  My fun and exciting little princess!!

Love you all the days,
Mommy

Life in the Makris house after STX-209

We are about a week and a half without STX-209.  Well life in the Makris house is definitely different.  Not as different as I was thinking it would be, but different just the same.  We are seeing a lot of changes, some good, some not so good.  Hayden's impulse control seems to be gone.  It breaks my heart to see him struggle so hard with it.  It's almost as if he knows it not right but he can't do anything to stop it. He will lash out at me occasionally and then say "mom, I'm sorry, I'm so sorry".  It kills me. Cynthia  seems to be getting the brunt of it.   He is pinching and pushing her if she bothers him.  Let's be honest she is three and a little sister so she bothers him a lot.  Most of the time its on purpose and frankly often she has it coming.  He hasn't "hurt" her at all but it is a little rough.  It catches her off guard, she's not used to it.  She didn't know Hayden before STX-209.  She is taking it in stride though.  I've talked to her the best I can so that she will understand what is happening.  She so compassionate and loves him so much that she just seems to understand.  I wouldn't call it  aggression it's more of just agitated and it never really hurts anyone it's just there.  I am praying we can find something that will help with agitation and lashing out.  Hayden has never been aggressive or mean and my goal is to keep it that way.


His anxiety is higher than it has been.  He is having a really hard time with transitions again.  Even small ones within our house.  For example the other day we were finishing up breakfast and transitioning into our summer homework time and he had a slight meltdown.  I had to talk him through what to do step by step. I've heard it called getting past the threshold and that is the best way I can describe it.  He needs extra time and prompting to do some of the most basic tasks.  He needs that little count down or a nudge from me to know its okay to move to something else.  Once we do that and he gets on to the next task he is completely fine.  I just have to remember that we can no longer rush anything.  We have to take it slow with a lot of patience.

One of the first things we noticed was how much he is repeating nonsense phrases and gibberish.  Just sitting there mumbling a whole lot of nothing or moaning.  I really did forget how bad that used to be. 

On the plus side he is talking in full sentences like crazy.  He is answering all of my question with more than just a yes or no.  He is adding his own phrases and opinions more than I have ever seen.  Today at lunch I pulled out chips and asked "Hayden do you want chips" he then replied "Yes, not those, I want these chips" and got the ones he wanted out of the pantry.  Hello, yay Hayden you rock and you can have whatever kind of chips you want.

We seem to be holding steady where we are right now.  I am ok with that.  I was praying first for no change.  I was so afraid we were going to lose him.  That he wouldn't stop talking and no longer have his own opinion and little attitude.  We most definitely did not lose any of that. 

I've had to change the way I parent.  I am not complaining about that.  I wasn't liking the mom I was becoming.  Stress was ruling me more than I care to admit.  We've had some reality checks over that last few weeks so I am trying to change the way I am handling things.  I am yelling less and loving more.  I am over looking the little stuff.   I say "I'm sorry" when I lose it.  I am taking moments to calm down before I react.  Most importantly I'm holding tight to and feeling blessed for this life God has given me.  I don't ever want to take it or my children granted.  I am sure I would have come to this realization eventually but losing the medicine and a few nudges from God have made it happen a lot faster.  For that I am grateful.

 

Love,

Tina

  

Ripping off the band-aid

This morning I gave Hayden his last dose of arbaclofen.  I packaged it all up and set it on Mike's bag to put in the mail.  Three months worth of medication sent in Fed-ex bag.  It's done, what we had so much hope in, is done.  We could have dragged it out.  We could have prolonged it.  I thought about it.  But in the end that's just not what we do.  Mike and I have always had the philosophy of you rip the band-aid off really fast.  You make it quick so you know what you are dealing with.  I can't imagine the emotional toll it would have taken to drag it out painfully.  That way has never been our way.  However, we are seeing some regression already.   Mostly with his agitation.  He is more quickly agitate and has less patience.   He is also fixating (perseverating) on one thing and it seems harder to bring him out of it.  He has gone back to  "moaning and screeching".  I kind of forgot he used to do that.  It all came back to us really quick.  He is however sweeter than ever.  He's doing things to make us laugh more than he used to. That might have a little bit to do with the fact that is now summer vacation. He has been looking forward to being out of school for a few weeks now.  He seems really happy.   I mean really happy. 

I am concerned for what tomorrow and the next few weeks will bring.  With no medication in him will the agitation get worse?  Will we have new issues to deal with?

I think in some weird way we are lucky to be finding out what is going to happen during the summer.  We have the whole summer to figure out where we go from here.  That was one of the deciding factors in starting the titration as quickly as we did and not putting up a fight. This way I can take him to the pool every day.  I can give him the space and time he needs.  We will have time to decide if we need new medications.  We  have time to figure out what those new meds may or may not do.  We will see where the next few weeks and months go.  Again we play the waiting game. 

I am so blessed to part of such a supportive and wonderful community.  Our Fragile X family has been amazing.  How we hope, pray and dream for everyone.  Every struggle is our struggle and every triumph is our triumph.  Tears are shed for children and families I have never met.  Virtual high-fives are given to children and families I have never seen face to face.  Hugs are shared with moms I have never actually touched before.  I have been on my knee's with my hand folded in prayer for families and children I have never shaken hands with.  All of this has come back to our family.  Tears, high-fives, hugs, and prayers have been given for my family.  For the Makris family (San Antonio, TX)  that some have never met, seen, touched or even shaken hands with.   Yet so many hope and dream with us.  This is the Fragile X community I belong to.  This the community I am so grateful we are a part of.  This is the community that will over come this set back and we will all come out stronger and better than before.  Because that's who we are.  God gave us this life and connected us in way.  He will pull us out, It may not be tomorrow, It may not be next week, or next month or even next year.  Clarity, peace and contentment will come again.  Until then I will continue to pray, cry, high-five and share hugs with you all.

"I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11

Love,
Tina

 

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