Tuesday, July 26, 2011


I sometimes I wish I could walk around with a buzzer. You know, like the one from the game Taboo?!? The reason why I want to walk around with a buzzer is so I can buzz people when they say the words that harm others.  Since Jackson’s diagnosis my ears have become more hyperaware of a word that is used in everyday language.  I will admit that I was a frequent user of this word and I had a hard time not using the word even after we found out that Jackson had Fragile X syndrome.  The meaning of this derogatory word is to make slow, delay the development or progress of, to be delayed.  The medical term is someone that has intellectual and developmental delays. I hear this word used just about every day.  Recently I have been going through this phase of keeping quiet about my feelings and letting use of the word anger and upset me instead of speaking up. I started taking it very personal because my sons diagnosis is mental impairment. If you haven’t figured out what word I am talking about, it is the R-Word.

I have talked this over with Sara for hours, trying to find the best way to discuss this topic with friends, family, and coworkers on use of this word that is bothering so much. Sara told me she saw a YouTube video a few months ago from Glee cast members Lauren Potter and Jane Lynch.  So I turned to Google and literally looked up “R-word”. The very first site that came up on my search was http://www.r-word.org. This site is exactly what I was looking for.   

So my challenge to all my friends, family, followers is….join me and take the pledge. SPREAD THE WORD TO END THE WORD! 

Friday, July 22, 2011

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.

Tuesday, July 12, 2011

To my long lost hero…

Donny, Andrew, and '54 Chevy
Today would be my brother Donny’s 36th birthday.  The last birthday we celebrated with him was 6 years ago at Red Lobster. My family likes to get together for dinner to celebrate our birthdays.  I remember driving around to several stores trying to find a ’54 Chevy Bell Air model as a gift, the same year as his.  I had to settle for a ’56.  I figured it would be a good gift for him since we spent a lot of time in hospital for his treatments.  Of course he couldn’t wait and started putting it together at the table.  Yup, that’s my brother for you.  I have so many wonderful memories of my brother and me growing up together. We were 18 months apart so we were close.  It still hurts me to talk about his cancer and how fast it took him away from us, it makes me angry too.  Since I couldn’t find the strength to read the speech (which I still carry in my wallet) at his wake service, I thought I would share some bits from it…

I don’t remember all the details of Donny’s arrival into the world, but I remember through pictures and stories helping mom feed him and being proud to be a big sister. As we grew we did a lot of things together. The two of us had such big imaginations; I remember playing super-heroes and detectives.  Wrestle Mania started getting big and we used to turn the living room into a wrestling wring with the couch pillows.  We used to say, “Ring da bell momma, ring da bell” to start our little matches.

When we got bigger we did a lot of growing up outside. We played a lot of baseball and wiffle ball in the back yard. One time Donny lowered the lawnmower and cut a baseball diamond in the back yard. I remember dad not being too happy about it then. When Donny was 4 he took the training wheels off my bike and just took off, he had no fear when it came to those things, much like his youngest son Owen. An interesting tid bit to add, Donny was almost 5 and he had been practicing on the swing set swinging from the top like George of the Jungle. He couldn’t wait to show dad when he got up for work, back then dad worked nights. When dad came out Donny started hanging onto the top and swinging back and forth when lost his grip and fell to the ground breaking his arm.  Owen last summer, just before his 5th birthday, was swinging as high as he could and jumping off. I believe he was making it a game to see who could get the highest when he fell to the ground breaking his arm. 

Donny liked to take things apart to see how they worked. He was smart in the sense that if we both had the same item, he would take mine apart. I remember being off playing at the house that had a horse nearby and coming home to see my dirt bike in a million pieces, all the ball bearings out of their shields, every little piece. It took me forever to get that back together and it never really pedaled the same way after that. He left it unlocked and it was stolen shortly there after. Funny how that works..  He took apart a lot of things that I had to put back together. I kind of owe him for my career in the computer technology field. It also made him a great car mechanic.

When we got to High School I participated in a lot of sports. What I was best at was running. I never thought in a million years my brother would try to follow in my footsteps in that area. I figured as big as he turned out he would be great at football, but no his freshman year he joined the Cross Country team. Image if you will a 6 ft something, 250 something running long distance. I thought he was crazy, I was like 5’ 5” and 94 lbs. and it was hard for me. That didn’t bother him though, I guess he just wanted to be able to spend time with me or show interest in something I did. I remember one race he ran like it was yesterday; it was a home meet at our school. Mom got to come to watch this one. At the end of the race I remember seeing Donny walking through the gates at the top of the hill about 100 yards from the finish line that led onto the track. Our entire men’s and women’s cross country teams were standing along the track waiting for him. Everyone was cheering his name and I was so proud. He started running again and the cheering got louder. There was one other runner in front of him, kind of the same build as him. Donny caught up with him and they both started running their little hearts out. Donny didn’t give up, passed him, and beat him. Usually in sports stories they host the camp up in the air, but in this case all the little cross country guys wouldn’t stand a chance lifting Donny up.   Instead the entire team circled around him and cheered his victory as though he won the entire race. They guy he beat was from Kickapoo High and a teammate chanted, “Hey Donny, you kicked him in the poo!”  I think even one of the freshman who medaled in the race gave his medal to Donny.  It was such a proud moment for me.

I never realized that Donny looked up to me growing up; I always figured he just liked to get on my nerves taking my things apart. In 2004 I played for the St. Louis Slam, a woman’s full contact football team. Donny came to all my home games.  I got injured playing and had to have knee surgery.  I also needed new tires or an oil change, so my friend drove me and my car up to Dobbs to see him. I was on crutches, so it was a day or two after surgery. Donny was so excited to show me his tool box, he opened a drawer and in it was a newspaper article with a picture of the team with my name mentioned in it. He was so proud of me that all his work buddies knew about it as they stopped by to say Hi. I was overwhelmed because I had no idea. Of course they all asked me if I was going to play the following year.

I hope I was able to show Donny how proud I was of him. When I was bigger than him, I used to beat up the kids that would tease or make fun him. He didn’t need me much as we got older, but I would be right behind him in any battle if he ever needed it. He always had the biggest heart of anyone I ever knew. He was the kind of guy that even if he didn’t have a pot to piss in, he would give everything he had if you needed it. He loved his family and friends so much there wasn’t anything he would do for any of us, no matter what the consequence. My sister-in-law shared a story the last week he was with us in body. This was the time when Hurricane Katrina devastated New Orleans. Donny was watching TV and there was a family on the screen that had lost everything, but each other. He told Tricia that they needed to help them, this family needed a place to stay. When Tricia asked how, he said “you know the Wilson family who is standing right here in our living room.” Even though the family wasn’t really in the living room, Tricia humored him and said they would see what they could do. Because of his big heart and so many things I always looked up to him. He was my little big brother, my hero who fought such a courageous battle.

It has been almost 6 years since Donny passed and there isn’t a day that goes by when I don’t miss him.  Every now and then I hear a Metallica song and have to blare it as he did when we were growing up. I know every word to “Enter Sandman”.  It makes me smile…

I love you Donny! Happy Birthday! I hope to see you in never never land…

Slideshow pictures of Donny through the years

Monday, July 11, 2011

Parenting Oye Vey

This past Friday afternoon I was just about to walk away from my desk to grab my lunch when my phone rang, it was Sara. When I answered the phone, it took her awhile to make words, with sniffling and that breath I knew something was wrong and the words that came out made my stomach drop quickly. "It's Jackson....he's not doing well, somethings wrong...he's not responding." Those were the first words. I calmly tried to ask for more details. "He was napping, we at parents, I heard a strange noise, he was vomiting, but was laying down, his eyes are pin points, called doctor, they said call 911." Deep breath on my end, calmly ask where is your mom. "She's gone, dad is here, dad feel his head...  keep it up..  I don't know what to do." Is an ambulance on it's way? "Yes, should be here soon...I am scared, I don't know what I am supposed to do, dad...is he breathing?" What hospital are you going to take him? "Should we St. Clair, or Children's? St. Clair is closer..." I answer with let's wait for the paramedics to get there, St. Clair doesn't have a pediatrics, they will ask you where you want to go, we want Childrens.. Tricia did not have a good experience at St. Clair, don't worry about how close...  Is Jackson awake? "He is drifting in and out, I don't know what to do..." It will be OK honey, just try to be calm. What did you guys do before you went to your parents? Did he bang his head at all today? "We went to the gym, they came and got me, he was crying and when he saw me he went and banged his head, but not any harder than normal." OK, well maybe it was on the right spot and he has a concussion or something, but everything will be OK. "I think they are almost here, I will call you to tell you what hospital, I love you." I love you too...  

Inside I am freaking out, but I am still at work and need to let my boss know. My team lead is online, I shoot her a quick chat to let her know I have an emergency and I send an email to the boss to let him know I have left the building. I text Sara to let her know I am on my way to the car, call my cell phone and not my work phone. I have a 5-10 minute walk to the car, but to honest I think it only took me 2 minutes. Get in the car, drive out of the garage, pull over and waited for the call. Sara calls not too long after that, "We are going to Children's, my phone isn't working well, I will see you there." Children's is not far from my work, but far from where the ambulance is coming from.  I am still freaking out inside and stay calm on the outside. As I am pulling into Children's phone rings and it is Sara's dad. "Jackson is OK, but it is good that he going to the hospital. He isn't acting himself, but don't worry everything will be OK." I answered back, that is good to hear I am at the hospital now. "Sinky is on her way, but the ambulance will probably get there first, she was running errands in South County." I answered, well I hope she don't try to rush, I am sure everything will be fine. "Yeah, everything will be fine, I will let you go know, call me when you can give me an update."  Will do I say as I pull into the parking garage. 

Why is it when you are in a hurry at a hospital, you can't find a spot? Also you pass like 5 potential spots, but the a-hole has taken up two spots because they can't park...  I would get a ticket or towed if parked that way, but anyway, finally a spot I can fit in on the 5th floor.  The ER at Children's is on floor one and even though I am sure I have arrived before the family, I am in a hurry. Go through security, check in at front desk. They say the ambulance should be here in 6 minutes, I can wait by the windows and watch them pull in. I am nervous as all get out as I look out the window and see my mother-in-laws car fly into the garage. Somehow I  knew she would get there before the ambulance. LOL!

Before she walks to the ER two ambulances pull into the garage.  My heart is jumping out of my chest. Sinky checks in at the front desk and rushes over to me. I let her know they just pulled in. She has a look of utter panic on her face. We discuss the bits and pieces we have been told. "Gosh I hope everything is OK." I assure her that everything is fine and that if things weren't the paramedics wouldn't have left and they pulled in without lights or the sirens blaring. Finally here comes Sara and Jackson. Sara looks scared, but is doing really well all things considering. They have to check in at the nurses station and I finally see Jackson's face. He sees me, quick little smile, but he doesn't look like himself. Sara signals me over as we go into the nurses station and she answers all the questions. I am holding Jackson and he is really lethargic. Nurse takes his temp, it is 99 under the arm. Nurse hands us some Motrin and asks more questions. I am not hearing her exchange with Sara, it was like the school teacher in Peanuts cartoon. Nurse take vitals, weight, helps with Motrin and gives us a pager, has us take a seat in the waiting area. Jackson is cuddled in Sara's arms as Sara answers Sinky's questions. 

Someone comes and gets us and takes us back to a room. Sinky is still asking Sara questions and a nurse practitioner comes in. More questions, Jackson is wanting to sleep, uncomfortable, and fussy. He will not let us put him on the bed or in a gown. Nurse practitioner lady says, don't worry about the gown...just take his clothes off down to his diaper, I will be right back to examine him. This always has always puzzled me why doctors or nurses leave the room. They are going to see you in the buff anyway, lets just save some time and I will strip down while you ask me more questions. Right! Any way, back she comes...  Jackson is staring to look a little better, but wants to sleep. Nurse pract. lady examines Jackson in Sara's lap and asks a bunch of questions. He is crying a lot, but not because of what the nurse is doing, just because he doesn't like her in the room with us as she learned the first time she was in. She is thinking something stomach viral, without the diarrhea, not ruling out a head injury at this point. She is not worried about dehydration, he has been drooling this entire time. She thinks we should try seeing if Jackson can keep liquids down first, then if he doesn't keep them down or doesn't improve, then we can try CAT scan. She is going to have the attending doctor on staff come down and discuss the options. 

Jackson starts to sleep after the nurse practitioner leaves the room. Then the doctor and nurse practitioner come into the room. The doctor listens to the nurse and asks a few more questions. He kind of walks around the room a little bit and observes Jackson as he doing so. He says he doesn't think it is meningitis or anything serious, understands our concerns with the possible headbanging, and suggests we try some Zofran first and give him some liquids. If he doesn't hold that down, then we go for a CAT, but that it is up to us what we want to do. To this the nurse practitioner adds that what she would do in our situation...  and that CAT scan...blah blah radiation... blah blah. Sara asks how do they do a CAT on a toddler that doesn't sit still. The doctor says they will strap them down,strap the head, and it is real quick the hardest part is the strapping down. I think that was all he had to say, but Sara still looked at me, "What should we do?" I say lets try the Zofran first. To that a nurse shows up with the dissolving magic pill. Jackson wants nothing to do with it, but we get him to finally take it. 

Sara's mom calls her dad to let him know what is going on. Sara calls the FX doctor's office. We wait.. 30 minutes later comes the melting Popsicle in Powerade.  Jackson wants nothing to do with it, so the nurse practitioner leave it with us. We try a few more times and he is turning it away, he is super uncomfortable and fussing. We try the TV, but even with 13 children stations, nothing is getting his attention, where is Mickey Mouse Club House when you need it most. Nurse lady comes back in, still not taking it we tell her. She asks if we have something he will eat. Sara whips out a Go-Go Squeeze (a genius squeezable apple sauce) and Goldfish. Nurse says, only let him have just a 1/4 of the applesauce, Jackson starts sucking on it quickly and Sara has to pull it from his lips. We give him a few crackers and wait. After 30 minutes and no more puking later, nurse practitioner checks in. She is thinking he is doing better, as we are all at this point. Fever seems to be gone. Talks about letting us go home and what we should do if he starts vomiting a lot. Sara isn't too sure, she saw him at his worst, but the nurse pract. gives us some more words of comfort and says we can stay as long as we want, suggests following up with our pediatrician in the morning if they have office hours.. Jackson on the other hand is ready to go, he is giving us the bye bye sign, trying to walk out of the room. After a few more minutes we decide we can go, if we need to we can come back or go see Jackson's doctor in the morning. Nurse practitioner gives us paper work and instructions, we are on our way home. Jackson is looking so much better, he of course wants to eat a bunch, but we have to go slow with that.

We make it all the way home and Jackson doesn't get sick any more that night. On the way home the patrician's office calls to check up on us. We also get a call back from the FX doctor who is ready to switch his medication to help with sleep. We give him some Motrin before bed and have our same going to bed staying asleep troubles. It was a weekend full of fevers and a few more vomits (time to get rid of couch). A visit with our pediatrician was good, reassures we did the right thing because of the lack of response. She tells us she has had a few patients with same fever and stomach issues as Jackson the last few weeks. 

Today I can report no fever and no vomit, back to normal self. 

Friday, July 8, 2011

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....."

Noggin bruising…

Jackson had a rough day yesterday and again today.  He has been banging his head a lot since upping his Tenex to a full dose.  Head banging is something he started doing around the time he got his first ear infection, he was around a year and half at the time. He has had numerous ear infections since then and around Christmas time we had tubes put in.  We have talked to all our therapists, doctors, and teachers to find an answer as to why or how to get it to stop. However no one can help us figure it out. Everyone asks us the same questions, when did he start, does he do it all the time, is he doing it for attention or if he doesn’t get his way, does he do it when you aren’t in the room, does he cry afterwards?  We have tried helmets, but we haven’t found one that works or that he will let us put on, let alone stay on. When we went to TouchPoint they saw that he used the behavior more when mamma was around.  He also used it when he wanted to get out of doing something. Since it is an injurious behavior, you can’t ignore it, so the suggestion of putting your hand between his head and object used to bang on all the while not talking to him or looking him in the eyes came into play.  Sometimes this works, sometimes redirecting works, but lately when try to put your hand in front of him, he will sit down quickly and use the hard wood floor.

Some FXS and Autism Spectrum disorder kiddos do behaviors when they have a sensory need.  To avert the head banging we take Jackson swinging or go for a ride in the car. We also push him in his little Tykes Coupe or his Radio Flyer. Talking him out on the deck when there is a cool breeze sometimes works or putting him on his jumpy horse.  Finally the best ammo for this is pushing the vacuum cleaner around, doesn’t even have to be on. Yesterday he actually broke the skin in the middle of his forehead. We had to use a Band-Aid to stop the bleeding because trying to use a wet wash cloth was ridiculous. Using all our aversions was not successful, as soon as we were done, right back to head banging. Pushing the vacuum around wasn’t working either, for whatever reason he had to have it on.  He just doesn’t seem like the same kid to me, seems less of a morning person and very crabby all day.

Sadly we can’t figure out why our little man is doing this. Does he feel dizzy? Does he have a headache? Do his ears hurt? Is it the medicine? Is it just because of his diagnosis's? Sara is worried that if she takes him in public that Child Protective Services will show up on our door step because he has a huge knot and bruise in the middle of his forehead.  We do live in an area where everyone likes to be up in your business and if you slip up at all the cops will be at the door.  I try to assure her that if CPS shows up we have enough documentation on his head banging behavior that they will just walk away.  Today I am the lucky one who left home to go to work, so Sara has to deal with it all by herself.  Lucky might not be the best statement as today has not been a great day work at all, so I have to figure out how to leave that at work and not bring it home.  Jackson has PT today and Sara is going to call the FX doctor in Chicago.  I really hope the doctor can give us some advice today…

Wednesday, July 6, 2011

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 11th, 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 1st 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.”