Hello blog, remember me…

I want to write on my blog as much as possible, believe me I do.  I wish I could find the time, but it is so difficult. I don’t know how the blogs I follow do it, some of which have more than one child with Fragile X.  These moms are truly amazing and I feel like I truly know them and their families, even though we have never met. I want to thank all the friends and family who follow and read my blog; I didn't realize how many people enjoy our family stories.

So much as happened since I last wrote I don’t even know where to start.  We had the 6^th annual Fragile, Not Broken Walk for Knowledge in June.  Even though the walk fell on the same weekend as the Komen Race for a Cure, there was still a big turnout.  So many of our friends and family came out with us and walked in support of Jackson.  I feel like I can’t thank those who participated and donated enough, it means so much to me.  I feel bad that I haven’t had a chance to individually thank everyone.  Jackson was all smiles all day, helps that his nephews were there.  I hope that our team grows every year.

Team Jackson 2012

Sara and I have been trying to find a house since April in the Parkway West district.  We found a house that we loved spite the fact it needed a lot of updates and got an accepted contract, but after the inspection revealed a multitude of problems we had to walk away.  Honestly I am not sure which was the last straw as the list grew, maybe it was the massive leaking basement wall after a slight rainfall or the mice family in the attic, but our inspector found 42 items that needed to be repaired.  Some of those items included more than one item, like the leaking faucets in all 3 bathrooms.  The good news is we didn’t buy the money pit; the bad news is we really wanted the house.  Two weeks…  We had called Parkway West when had our initial accepted contract to get the balling rolling before we even moved.  I think the icing on the cake of heartbreak for the horrible inspection was the call we got from Parkway West about adding services to Jackson’s current IEP.   They were really shocked at the limited services he was receiving at Northwest, they were specifically floored that Jackson was not receiving any speech at all.  Sara told them we were paying privately, to which Parkway responded that we shouldn’t have to pay privately, the school should be providing that.  Even though the house fell through it only reassured us that making the move is in Jackson’s best interest.  So the day we walked away from the contract on the money pit house, we started looking again.  It is so exhausting going from work to looking at multiple houses in one night.  We are fortunate to be able to drop Jackson off at Sara’s moms on the way and pick him up after.  Now if we can just find a house we both like again…we will be set. 

Catching a wave

Having fun in the ocean

House hunting set aside we traveled as a family to Miami for the International Fragile X Conference.  It was our first conference since Jackson’s diagnosis.  We also tried to get a little bit of family vacation while we were there by visiting a beach.  The hardest part of the trip for all of us was the plane ride there and back.  Jackson doesn’t sit still for a long period of time ever, so to have to sit still for 3 hour flights just forget about it.  We tried medicine on the way there, then upping the dosage on the way back.  We had his favorite snacks and activities, but nothing seemed to calm him.  We had a lot of hair pulling, a lot of kicking the seat in front, and a lot slamming into the back of his seat.  Aside from that, the trip was great.   I was warned about Miami’s humid weather, but coming from St. Louis with 104 temps at 90% humidity I didn’t even notice.  We stayed at the hotel where the conference was held, it was walking distance from a mall with a ton of eateries.  We got some great pictures at the Hard Rock Cafe, ate at Bubba Gump Shrimp, and the hotel food itself was amazing.  Jackson was a flirt everywhere we went and his favorite spot was the hotel pool.

Ham'n it for the camera

The conference itself was amazing. They offered childcare which was great because there were so many sessions to attend.  Sara and I divided and conquered, trying to go to as many sessions as we could.  It is overwhelming the amount of information they pack into these sessions.  I went to a clinical session where I was so lost from start to finish.  Sara and I both attended Hand-On Hyperarousal Workshop that was led by Mouse and Tracy.  It was by far my favorite session because we got to experience how it feels to be hyperaroused and we can teach others what it feels like by making them participate in this small little exercise.  I thought I knew how hard it is for my little man to function in this world, but I was completely blown away and to be honest had no real clue.  The common word used in the majority of the sessions I attended was “Hyperarousal”.  Even though the information at times felt overwhelming, it was also good to be reassured that we are on the right path in helping Jackson succeed.  Since Jackson is still young we did miss the big luncheon and dinner banquet which would have given us more opportunity to talk to other families, but I am glad we chose to have some family time too.  Sara did get to go to the Mission to Lars viewing while I put Jackson to bed, I was a little bummed that I didn’t get to see that.  We were able to meet up with Sara’s grandpa and grandma for lunch.  The visit seemed too short, but they were able to see Jackson.  Sara’s grandma brought Jackson a little goodie bag with yummy treats, cute sunglasses, and bubbles.  Jackson literally bounced the entire time they visited.  I can’t remember if Jackson was walking yet the last time they were able to see him. 

Since we have been home from Miami we have been busy house hunting.  Saturday we had a showing of our house and went to the Fragile X BBQ at the Howards.  They are so nice to open their home to everyone and the food spread is always amazing.  Even though Jackson takes up the bulk of our time at events, we find time to take turns and mingle with the other parents.  It is nice to be around friends who are or have been in shoes similar to ours.  Plus there is a pool and Jackson loves pool time.  Jackson pulled on one of the little girls’ hair in the pool and she handled it so well.  I also have a BBF every time I see her.  She loves to ask many questions and has such a great imagination, I really enjoy our talks.  She even lost a tooth which was super exciting; I hope the tooth fairy visited her.   We wish could have stayed longer and visited more, but we didn’t want to push Jackson too far.  I think he may have had too much pool water because on the way home he made himself sick.  Jackson was getting so much better at not sticking his fingers down this throat, but this time we couldn’t distract him away from it at all.  Sara believes he had an upset stomach.  When we got home I pulled the hose around to clean him and his car seat off, he of course loved it.  Then I took him upstairs for a bath while Sara finished cleaning the car seat.  After his bath, we switched and I finished cleaning out the car.  Did I mention that after he got sick he starting clapping and smearing his stomach contents on the window?  I think most parents would be screaming at the top of their lungs over this, but all I could do is laugh at this point.  I will admit I was not laughing when he was making himself sick on the way home, mostly because it makes me want to get sick.   The finger thing has always got to me.  I sure do miss Billy Mays, but Oxi-clean is by far a life saver for times like this.   Next year we will be living much closer to everyone so we will be able to stay longer and the drive home won’t be as far, less time for incidents like this. 

Yesterday we stayed home.  There were a few open houses we thought about seeing, but I didn’t feel like leaving the house for anything.  We took advantage of the no tax weekend and bought a new MAC because ours is on its last leg.   Sara also bought a wireless printer so I got to play tech geek in the afternoon getting it all setup.   We took a much needed family nap and after dinner went for snow cones.  I should feel rested today, but I am not quite there yet.  I think once we are moved into our new home I will be able to get caught up.  Come on new home.. Wherefore art though…  

Itsy Bitsy Spider

Toddlers just don’t get Day Light Savings time; I think most parents will agree to this.  Before day light savings everything in the sleeping department for Jackson has been fairly consistent with bedtime around 8:00 PM wake up between 5:30 – 6:00 AM.  Around 30 minutes after Jackson takes his medicine, he will walk himself to his bedroom. He has also been staying in his bed overnight a few weeks.  Luckily Day Light Savings didn’t screw that up, however Jackson still an hour behind and. He starts getting sleepy at 6:00 PM, by 6:30 PM he is nodding off without his medicine.  We have been trying to wait as long as possible to give him his medicine and we are barely making it to 7:00 PM.  The earlier Jackson goes to bed, the earlier he rises.  So for the past two weeks he is getting up at 4:45 AM.  High fives all around… NOT!

     

Jackson was getting super crabby over the fact we would not let him go to bed a few days ago.  He was getting so frustrated with us he started to bang his head, so we decided not to push him further. He was sitting on the stairs between my legs as we gave him his apple sauce with medicine.  Sara went to walk away when she spotted a creepy crawly spider in the entry way.  “Eeekkk!” she shouted “Get it, get it….”  In our house it is my designated job to be the bug killer, only this time I couldn’t take care of it because Jackson laying on me and I was keeping him from banging his head on the steps.

“You got shoes on, step on it” I answered.  So Sara stepped on the spider, but when she lifted up her foot, the spider started to run away.  Those darn New Balance shoes have too many grooves and are not the best at killing creepy crawly things. 

“Eeekkkk!” Sara shouted and then she stomped and annihilated the spider.  Jackson looked up at Sara with a huge grin on his face.  When Sara lifted up her shoe, the spider was gone.  “Eeekkk!  Eeekkk! Eekkk!” Sara shouted again while she was shaking her foot faster than Michael Flaherty from Lord of the Dance.  It was about this point where Jackson and I started hysterically laughing.  “It’s not funny, get it off…Eeekkk!  Get it off!”  Then Sara starts swatting at the thin air.  She is still Lord of the Dancing across the play room.  

“Eekkk!”  Finally what was left of the spider flew off the bottom of her shoe onto the entry way floor.  She then kicked the welcome mat at the multiple body parts that were laying there.  I think it was a burial service, maybe even closure for Sara.  Jackson and I are still laughing hysterically. Sara tells us “It’s not funny”, but that just makes us laugh harder.  I am seriously laughing so hard that tears are rolling down my face.

After Jackson and I are able to slow down the hysterical laughing, I tell Sara, "That shit was YouTube funny" and we head up the stairs to go get PJ’s on. I opened the gate at the top of the stars and as Jackson stepped up into the living room he said, “Eekk! Eekk!” and continued to laugh.  I was so proud of him, not necessarily for making fun of Sara (well I will admit I got a kick out of it), but for imitating Sara.  Jackson has worked very hard in his therapy sessions on imitating motions.  This time Jackson imitated the sounds Sara made, not the Michael Flaherty routine that went with it.

A possible match

We were a little leery at first on the Seroquel; Jackson was still waking up in the middle of the night.  The first few days on it was also taking us around an hour and a half to get him to sleep.   After 3 nights we emailed our FXS doctor because the half dose didn’t seem to working and we forgot to ask how long we needed to give it to see positive results. She said with the results he is having we can bump him up to a full dose and we should see good results in a few days. She also said that some of the behaviors will also decrease after a week.  I will say so far so good now that he is on a full dose.  We got 2 nights in a row, Sunday and Monday, without waking up in the middle of the night.  Unfortunately Monday night I played softball and re-injured my shoulder enough that it kept me awake all night. We have also eliminated Jackson’s nap time, which I think is helping him stay asleep. Nap time has been a struggle for awhile now anyway and he doesn’t seem to slow down in the middle of the day without one. From time to time he will take a little power naps in the car, but they don’t amount to much at all.

His behaviors haven’t increased, but they also haven't gone away.  The therapists are hoping that if we can find something he will chew on; it might decrease sticking his fingers down this throat. Sara is crafting something for him to chew on.  He used to do really well with the “P’s and Q’s”, but now he won’t wear them around his neck and for him to hold one without throwing it is impossible.  We are still working on the head banging, but it isn’t as frequent as it was on the Clonidine. Sara has been giving him deep pressure rubs and I have been playing rough and tumble and the combo of the two seems to be helping a lot. So the Seroquel so far has been very promising. 

Sleep, wherefore art thou…

Dr. Ave Lachiewicz discussed behaviors and treatments a few weeks ago at the behavior workshop that we attended. One of the topics in her discussion was based on medication.  Everyone is wired differently, so sometimes you have to try many different types of medication before you find the right one, or mix to fit your needs.  She talked about the several different medications that have shown great results with children with Fragile X.  It was good to see the different medicines we have tried with Jackson show up on the list and was really interesting to see how they are classified and what they are used to treat in Fragile X patients.  I think I said this before, but I had a really hard time in the beginning with starting Jackson on medication and the main reason I was against it was because he can’t tell us how it makes him feel. After going weeks without sleep and going to Chicago in May, I finally agreed that medicine might be what is best for him.  Seeing this presentation also helped eased my feelings.

Jackson has been doing really well on Trazodone, with the exception of waking up at least once in the middle of the night, usually around 2 AM. Unlike before, we are able to get him back to sleep, but only in our bed. He will have nothing to do with his crib.  We are working with our ABA therapists and thinking it is close to upgrade to a big boy bed. We also thought we should hit up or FXS doctor and see if there is an extended release pill in the same family of Trazodone. There is an extended release, but the pill cannot be crushed or dissolved and Jackson can’t swallow pills just yet, so our doctor suggested a different medication in the same family as the Tenex called Clonidine. She thinks it will help with overstimulation.  So we tried Clonidine and started seeing the same negative results we saw with the Tenex.  The head banging increased, he wasn’t his morning self and just seemed like a zombie all day.  It was also difficult to get him to sleep and he was very restless which meant he tossed and turned all night not sleeping at all. So we reported this right away after three days to the doctor.  No more alpha agonists types of medications for Jackson.

We are now trying Seroquel, it is a different family as the Trazodone, but has some of the same mechanics to help with sleep.  Jackson is back to himself during the morning and daytime, which is great.  So far on the sleep front it hasn’t been giving the results that we would like. He has only been on it two nights and both nights it has taken over an hour to get him to sleep.  He is waking up around 11:30 -12, so it isn’t keeping him a sleep and he seems super restless throughout the night.  The doctor said if we do not get good results, we can go back to the low dose of Trazodone. So between the two different new medicines we are going strong on 5 nights of restless and limited sleep. I guess we will see how it goes for the next few nights. I am in dire need of a nap.  I am afraid if I lay down for one I won’t wake up for a week. 

These are a few of his favorite things…

I am happy to report that Jackson has been doing much better on his new medicine, Trazodone. He has been on it for a little over a week and so far it has helped him get sleep and sleep throughout the evening.  We have also noticed it help prevent the constant head banging, although he will still bang his head on occasion usually when he isn’t getting his way. The other things we noticed are he is back to his happy morning self, his appetite is back, and he isn’t crabby all day.   His therapists have noticed a difference too, he is more focused during his sessions. Today is National Fragile X awareness day so I thought I would take this time to share some of Jackson’s favorite things.

Jackson loves to play catch with me on the stairs.  I have been throwing a ball at him since he was able to hold himself up in his bouncy contraption. He is starting to get really good at catching. We have all kinds of various balls for him, his favorite lights up as it bounces. He will sit at the top of stairs and toss the ball down to me. His loves to watch the ball bounce on each step to which I make silly sound effect noises. Then I toss the ball back up to him.  It is so fun to watch.

Jackson also loves to watch Mickey Mouse Club House and Baby Einstein.  They are on forever repeat in our house, even though he might only watch 10 -15 minutes at a time.  He has always loved the Hot Dog song and dance, to which he recently started dancing along to.  With the Baby Einstein videos his favorite toys to watch are the toys with balls or any spinny things.  Recently he started noticing the wind up robots and when they are on he starts walking around like them. He also loves it when any of the Einstein kids are on. He just loves people…

Jackson is a huge fan of the swing. We installed a bar in his doorway to his bedroom several months ago and when he seems to be having a hard time swinging will calm him down. Last weekend I put together an outdoor swing-set and our little man is obsessed with it. Unfortunately St. Louis has been under a heat advisory since the day I put it up and if the humidity doesn’t get to you the mosquitoes might just carry you off.  Jackson doesn’t seem to mind the heat one bit. He loves to ride in his radio flyer, stroller, or Cozy Coup. You can walk him forever in those things. The neighbors love to see him as much as he loves to see them.  He will wave and flap his hands in excitement.  When I get home from work I usually take him for a walk and sometimes after dinner. Lately with the heat we are only getting one walk in. His other outdoor favorite is the pool.  Jackson loves the water and luckily Memaw Hamilton has a big pool that we can all get in. This love for water is great because we have no problems with bath time, except for the crazy splashing. Be prepared to be soaked if you ever have to give my son a bath..

Jackson could watch you push a vacuum for hours. Lately though just pushing it around isn’t enough, he has to have it on.  He has figured out that the cord has to be plugged in, thank goodness for those plastic covers.  We bought Jackson a mini-Dyson of his own for Christmas, but he prefers if you push it and not him. He is a smart child…

Jackson likes to watch people come and go from our house. I don’t know what it is, but he loves to watch people through the window. If a car goes by and he hears it, at the window you will find him.  The neighbors across the street like coming home to see him knocking on the windows and waving away. You can see his big smile from across the street. It brings me great joy to see this every morning when I leave for work and when I come home. Speaking of cars, he has this awesome Fisher Price Speedway toy. The center of the floor spins and it has special cars that go on it. It has a ramp the cars go down into the center and the cars go around and around till they shoot through the finish line.  It is a very loud toy, but he loves it. He has perfected balancing the cars on their rear bumper while the floor is spinning. I can’t even balance them on a flat surface. 

Jackson loves music. He will pick a favorite song and want to listen to it over and over. Right now the favorite song is “If you are happy and you know it…”.  He is also a big fan of the “Farmer and the Dell” and “Twinkle Twinkle Little Star”. I am not the vocalist of the house, but since he was born I have sang him to sleep.

Mmm, Mmm, Mmm, Mmm

Last night was a rough night of sleep in our house again. I was ubber crabby to say the least. It was hard to not get out the shower to finish getting ready for work, but I made it through. The best parts of my day are leaving for work and coming home. You might think that is strange to include leaving for work in that statement, but let me explain. Even though today was rough getting out of bed I am still one of those morning people.  I have always looked at mornings as a fresh start to a new day.

Sure...going to work is not my favorite thing to do, it is the send off I get that makes it so special. One of Jackson's favorite things to do is watch people leave or come. He will stand at the window, knock and bang on it, flap his hands, making his "Eeeennnneewww" sound, jump up and down, and wave. He is so excited. If the neighbors are out, he will get just as excited and wave to them. He loves to see people on the other side of the window.

This morning Jackson was really fussy, but after laying around a little bit with mamma, he seemed more his morning self. He knows when it is close to the time for me to go down the steps and drive away and he starts getting excited. Mamma and Jackson were sharing a banana at leave time, but that didn't stop him for giving me a kiss goodbye. Mmm, banana kisses. I get my kisses from everyone every morning and then down the stairs I go. As I open the garage, I can hear him banging on the window and jump'n up and down already.  I start the car, pull out, and look up...there is my son with the biggest smile on his face. I always roll down the window so I can hear him. He is waving feverishly while jumping up and down, I am waving back to him wishing I could sit in driveway until he is bored with smiling and waving at me. I need to get a picture of this, perhaps even some video.

Coming home I get the same reception.  As soon as Jackson hears the garage door open, he runs to whatever window he is closest to. The best days to see this is on Monday and Tuesday when I stop in the middle of the driveway to either take out or bring in the garbage cans. You can hear him from the driveway, "Eeeennnneeewwww!" and knock away. If he is downstairs when I open the door he runs up to me and pulls on my pants, then runs away and comes back. This goes one a for a bit before I get my welcome home kiss. If he is upstairs, he is waiting pacing back and forth at the top, arms flapping away.  He looks so happy and excited to see me. I can't even explain how good it makes me feel.  I get kisses from everyone when I come home from work every day.  When I say everyone that included the doggies. How lucky am I to have that much love under one roof!

Another thing to add about the morning drive in...  I am a huge fan of music and I am lucky to have Sirius satellite radio. It gets me going for the day and I also have a dock that allows me to listen all day at work. It is a total savior for me. When I drove away from my house this morning the first song was the Crash Test Dummies "Mmm, Mmm, Mmm, Mmm". I haven't heard that song in forever.  The line in the song that hit me and got me thinking was, "She couldn't quite explain it."  That line inspired my post today, trying to explain how lucky I am and my bubbly mood despite the limited sleep for the week. It also makes me think of the doctors, philosophers, psychologists, or therapists who can't always explain the whys or hows to the many things they discover about us humans. Or even when they have the science behind all the discoveries and still can't answer the questions.  Perhaps..."they'd just always been there....."

What is sleep...

No, that is not an answer to a Jeopardy question..  Sleep is something that has been lacking in our household. I wish I could have been more prepared for the lack of sleep I have had over the past few months, maybe I would have bottled up some ZZZ’s.

I probably shouldn't complain about not getting enough sleep either, Jackson slept through his infant-hood like a champ.  Even when he was teething, he would sleep through the night.  Looking back, I think he woke up in the middle of the night before he was 2 around 20 times.  Even when he woke up, it would only take 45 minutes to an hour to get him back to sleep.  I was the baby whisper back then; I could walk him up and down the hallway with him facing outward.  He did not like to rest his head on your shoulder and wasn't much for the pat on the back either. Either way, we had it easy then…

Now flash forward to a few months ago… Quick timeline… we got Jackson’s diagnosis on January 11^th, 2011, Jackson turned 2 in February, and we went to our first Fragile X group meeting/dinner in early March.  At the dinner it was so wonderful to meet all these other families in our area that have a child that has been diagnosed with FXS. There were two questions that I remember most from that night, “How is Jackson sleeping through the night?” and “What does Jackson like to eat?” I think every parent there asked us that.  Both of the questions were easy for me to answer, he is a good sleeper and there isn’t anything this kid won’t eat. I remember the car ride home talking with Sara and she said everyone asker her same questions.  Little did we know that shortly after that night everything would change for our family.

Sleep deprivation begins…Jackson started off with going 3 nights without waking up in the middle of the night, then on night 4 he would wake up and be wide awake for 3 -4 hours. Then he would sleep 2 nights and on night 3 up for hours.  Then back to 3 nights… up on night 4.  Sara asked one of the therapists if she had any suggestions.  She said to check with our patrician first, but that Melatonin might help.  Sara called the pediatrician, I turned to Google. We both found the same answer and that is Melatonin is a hormone that our body naturally creates to help us sleep.  The pediatrician was OK with Jackson taking Melatonin, started off with 1 MG. The first night was great and Jackson actually went to bed easier. This worked well for a week, then we were back to a night here or there of waking up. So then we upped to 2 MG. Same thing, worked well for a week. It was about this time we went to Chicago to meet with FX doctor.  She told us about extended release tablets and suggested trying those at 2 MB. If that didn’t have good results, then to try 3 MG and then if that doesn’t’ work then she will prescribe something called Tenex.  So Sara went to a naturalist store and found the extended release Melatonin.  I would say the first week seemed promising on the 2 MG, but then we had 3 nights in a row of wake ups. So we tried 3 MG and that didn’t work either.

Sara felt we needed to try the next step, Tenex and called FX doctor. Since I was on Jackson duty when we were in Chicago, I didn’t hear what the FX doctor had to say about this medicine, so again I went to Google.  I have to say I am really leery of any medication. Tenex is a blood pressure medicine that is sometimes prescribed for ADHD and hyperactivity.  Jackson is 2… and yes he is active and might not stay put for awhile, but again he is 2.  I am not comfortable with using medication just yet. Sara and I talked about it a lot. The first night with half a pill, Jackson went to bed easily, but at 12:30 AM he was awake.  He was also very agitated, seemed that rocking him made that worse.  It took awhile to get him back to sleep, then a few hours later same thing.  I forgot to mention, we padded Jackson’s crib because he has been using it to bang his head to the point of developing a large knot on his forehead.  We are used to the bruises, but this knot looked like we were trying to raise a baby Unicorn.  Each time you get him to sleep and put him in his crib, you are back to square one and fighting to get him back to sleep.  So we caved as parents and have been bringing him to our bed to get him back to sleep and so we can get some sleep too.

So the 1^st night on Tenex, not a great experience in my books.  Sara was told it could take 2 -3 weeks, so we gave it a few more days before calling the pediatrician to see if we can give him his Melatonin along with it.  She said that was OK and it worked one night where he slept all night in his bed. We waited out the full 3 weeks before calling FX doctor. She changed us to a full dose. We tried the first night and going to sleep was easy, but again at 12:30 AM he is up, but this time he goes back to sleep and stays asleep till 4 AM. We have been on this pattern now for almost a week. He seems super chill throughout the day and the therapist feel he seems much more focused during his therapy sessions.  Some nights when he wakes up you can tell he is having such a hard time getting comfortable.  He is violently thrusting himself around the bed until he finds that perfect spot. You have to ready for this because he will knock with his head wherever it lands like your face, your head, your nether regions…  This tossing and turning can go on for an hour which has created some crazy tension and frustration for us.  I feel bad that Jackson can’t tell us what he is feeling; I hate that more than anything.

So everyone in our house is walking around like Zombies. Takes me back to that scene in Date Night where Steve Carrell and Tina Fey are at dinner and Tina’s character says, “If I lay my head down on this table I might sleep for a month.”