Thursday, October 17, 2013

Say yes to peanuts

We had our much anticipated peanut challenge on Monday.  When I say much anticipated I mean I actually couldn't sleep the night before.  I was worried about him having a reaction, I was worried about him not wanting to eat any peanut butter, I was just worried.  This from a mom with a 2.5 year old kid with a genetic disease.  It takes a LOT to worry me. 

I read up on what to expect, a possible 4 hour long test where they start by touching peanut butter, then bringing it to your lips and then finally eating what is considered a serving.  Then they want you to wait between each test to see if you have any sort of reaction. 

We were prepared, we brought crayons and coloring books and our DVD player.  The Doctor came in with peanut butter on a spoon and said " His blood work shows him with no peanut allergy so lets just try this"  Um okay.  So Max ate his spoonful of peanut butter while watching Mickey Mouse Club House and it was all very uneventful.  Max wouldn't eat a second spoonful of peanut butter so we had to go and get a recess peanut butter cup.  The horror!  Max has never had one before, he loved it.

So basically we can have peanut butter.  It's a little scary I have to admit.  We have shunned it for so long.  But this opens up some things for us.  Granola bars for one thing were off limits.  Anything that said may contain peanuts we really weren't supposed to eat, although some times we did anyway.  The holidays and random events will be easier.  We don't have to worry about someone bringing in peanut butter cookies or what is in his trick or treat bag like we did before. 

The next 2 nuts on the list are Cashews and Pistachios.  We are going to do a food trail on Cashews first.  Even though these are less common nuts, if a product says may contain tree nuts and isn't specific to which nuts we have to assume it could make him sick. 

My favorite bible verse is about worrying.  My favorite is the last line.
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[a]?

To bad I didn't think of this the night before the food challenge

Wednesday, October 16, 2013

Fire Safety

Our local fire department frequently has a weekend open house.  I thought it would be fun this year to attend since Sam is so into anything that is big and has wheels.  Of course we decide to go after Sam's nap and he sleeps though almost the whole thing.  But the event was over at 3 and it was 2:15 we still had time to go. We loaded up the car and hit the road.  I was a little worried about Max and the sirens thing.  He really can't handle loud noises like that but I thought if he freaked out we can just go home.  

We got there and Max got to spray a fire hose.
He loved it!

Then we went into a little fake house and had a lesson on fire safety.  It was really a wonderful idea because fire safety isn't something we have really talked about at home.  They talked about the importance of crawling on all fours through smoke and the importance of finding a safe area out side the home for the family to meet in case of fire.  They encouraged us to practice this at home. 

Meanwhile Sam and Jeremy were having fun of their own.
Sam sat in every single fire truck they had available.  He had a great time.  He got so excited after this one that he ran to the next truck and totally missed that there was a curb..  The good news is there were several paramedics there to help us after he mashed his poor head into the concrete.   

Despite the road rash on Sam's face it was a nice time.  Max did not get to up set about any noises and got to spray water from a real fire hose and Sam got to "drive" a fire truck. 

When we got home I decided what we needed to do was practice what Max and I had learned and do a fire drill.  Jeremy turned the fire alarm on and we all crawled through our bed rooms, down the stairs and out the front door to the mail box, our meeting spot.  Next time we do a drill I think we will try it after dark..

Thursday, August 15, 2013


As many of you know Max cannot have peanuts.  We have known about this since he was about a year old.  I had given him a Peanut butter sandwich and he puked.   He puked every time he had anything peanut butter related for the next year.  We finally met with an allergist that told us to 1.Stop giving him peanuts and 2. He is also allergic to Cashews and Pistachios. He also mentioned that even though we shouldn't give him peanuts, his skin test and his blood test didn't actually show a peanut allergy.

I don't know why we don't just have normal test results but we just don't okay.

So we did fine all last year in preschool, gave the teacher an epi pen and told her NO NUTS for Max.  It worked great.  Probably too good cause they wouldn't let him to a project that had to do with coconuts.  Whatever as long as the kid doesn't puke.

So Basically we have been going about our business and doing well without nuts.  That being said I know that we don't always carry Max's epi pen.  I try too but sometimes I forget or its in another purse or something.  Well about 2 weeks ago a little girl was on a camping trip.  It was after dark and someone had made rice crisps with chocolate and peanut butter.  Someone fed the girl one of these "treats" and apparently didn't know she couldn't have peanuts.  They tried to use an epi pen on her but her heart stopped and she died, from eating a freaking peanut!

Meanwhile Max was at Vacation Bible school.  I had told the cafeteria about his nut allergy and they said they had no nut related snacks.  Cool.  So Max comes home from bible school on the same day as I read the article about the poor girl that died, with a pine cone and bird seed.  I guess they were doing that bird feeder craft where you spread peanut butter on a pine cone and then dip it in bird seed.  Thankfully somebody had remembered that Max was nut free and didn't let him do the craft with peanut butter.  Still I was freaked out like majorly.  I mean what if they hadn't remembered.

So I totally couldn't sleep that night.  I just couldn't stop thinking about that stupid bird feeder craft.  I had not even thought about a craft having peanut butter in it, never dawned on me.  So I took his little school bag and pinned a note to it about his allergy and his epi pens and finally was able to sleep.

This also reminded me that we needed to visit the allergist again.  They said oh yes it's been a while please come and we can do more testing.  CRAP!  So we went to our apt and talked to the dr. and decided that we could just do a blood test to confirm that he was still allergic to tree nuts and also to see what was going on with the peanuts.  Basically he said that if he doesn't test positive for peanut allergy with this blood test we can do something called a food trail.  A food trail is a fun thing they do where they just keep giving your kid more and more of the offending food and see if they have a reaction.  Thrilling!  I guess this can take up to 4 hours if it goes well.  Again Thrilling.

The thing is, even if he does pass the peanut test, he still will have to stay away from tree nuts.  So honestly for us it probably doesn't much matter because if you are a label reader you know that  "may contain traces of peanuts or tree nuts " is on pretty much all products that may have any sort of nut in it.  They don't distinguish which nut it has, its either a peanut or a tree nut.  

The other problem I foresee is Max being Max and knowing he can't have peanuts.  How are we going to convince him he can eat them?  I mean if your whole like someone tells you you can't have something... I have a feeling this really isn't going to change our lives either way.  But hey maybe someday they will find a cure for tree nut allergies.

Sunday, June 16, 2013

Welcome to Autism

When Max was a baby his first Pediatrician was a guy named Dr Kothke.  He was okay, seemed well informed, mostly answered all my questions with "he seems okay to me"  On Max's 2 year visit I mentioned that Max layed on the floor on his chest with his legs crossed for like a considerable amount of time.  The Doctors  response was that maybe he was bored.  Bored really?  Thats your answer? 

We didn't really need to go back to the doctor between that visit and having Sam.  We had Sam and took him to a different Pediatrician and liked her fairly well, even after she told us Sam has a genetic disease we still liked her.  I decided to switch Max to her as well.

So at this point Max is 3 years old, his speech is a little behind but not too bad but he is still doing his leg crossing.  I make a special Apt with our Ped and ask her what is up.  She talks to Max, makes sure he makes eye contact, knows his colors and says he is fine.  Okay

At this point I am so busy shuttling Sam around creation to his appointments i'm not sure I would have noticed if Max grew a second head.  Well the leg crossing continues off and on and at some point Max add rocking to this repitore of things he does.

Max starts preschool, in October his teachers want to know what on earth my kid is doing on the floor.  I tell them he is leg crossing "floor humping" and I don't know why he does it but the pediatrician isn't very concerned.  Max starts to rock in his chair also and the teachers keep grilling me on what is going on with him. 

After a 20 min phone call to the Pediatrician I am assured Max is fine he since his academics are very good the strange movements are steroetipic behaviors and he should out grow them.  Okay.

His preschool teachers are still concerned so I video tape his episodes and show them to Sam's occupational therapist, 2 therapists actually.  One didn't really know what he was doing and the other thought he was just centering himself.

At this point no one knows what is going on and I am tired of asking.  Jeremy and I even tried taking him off of wheat in case he had an allergy or something and still he floor humped and rocked.

A couple of monthes ago one of Sam's teachers from early on came over to the house for a home visit.  Max starts doing his leg crossing and she says "what is he doing"  I tell her no one knows but more and more I feel like we should be more concerned about Max then Sam I just can't get anyone to listen to me.  She says we should talk to an occupational therepist becuase he seems to have some sort of sensory issues.

So I call the pediatrician again.  I tell her again about Max's behaviors and she again falls back on how good he is in school.  I tell her I just want a script for OT and she wants to know what for.  Sensory stuff I guess I say.  She thinks if we are really still concerned we should see some one named Dr.Bowers.  Fine lets do that.

So our appointment was last Monday.  Before we get there we had to fill out like an 8 page form about our kid.  There were all sorts of questions about how his delivery was to how old he was when he first held a spoon to when he was potty trained.  The more I filled out the more I wondered if maybe we did have a problem.  I mean know that you ask, yes max majorly freaks out when a train goes by.  He hates to have his hair cut, he prefers is waffles to be frozen, he hasn't shown a hand preference and he was a late talker.  Or maybe we are over reacting and he is just weird. 

I show up with video of said behaviors in hand.  I meet a very nice man named Dr.Bowers who talks about all his strange behaviors and some other things and basically tells us he is on the spectrum.   The Autism spectrum.

He tells me that as we are sitting here talking Max pretty much ignores us and that the toys he chooses are all linear based toys.  Trains are a very linear toy no imagination involved.  So my kid doesn't have an imagination, super.  He goes on to say that his teachers probably loved him because he is a cute little kid that doesn't make to much noise and can say the alphabet. 

So from here we have OT and Speech therepy to begin soon.  We will also have some therepy when he is in school.  He isn't supposed to ride the bus since that is a time when he rocks the most and I am to make sure he is engaged and not off in la la land, or going down the rabbit hole, as Dr. Bowers put it.   We are also going to try something called the play project, which I hope will help him with the imagination portion of the problem.

So the next couple days I was pissed off.  I was pissed that it took this long to get a diagnosis and I was pissed that I know have 2 special needs kids.  I mean really 2 kids with IEP's  really?  I am fairly certain I don't have the patience for this.  How do we dicipline him know if he rocks when he is im time out?  How do we deal with his melt downs know that we know he has a problem?

There is a quote I love  that goes "failure to plan on your part doesn't constitute an emergency on my part"  I feel like I am living this right now.  I feel like I have all this stuff I have to do before he goes to school that we could have been doing years ago had anyone listened to me in the beginning.  Its summer we are supposed to be playing not doing behavoiral check lists. 

I stopped whining yesterday though.  Yeah I am still frustrated as heck.  I so wish we had found out sooner but I cant change that.  I find my self dealing with this much as I delt with Sam's diagnosis.  I had to have CHARGE free days.  Today I had an Autism free day.  That means I didn't read anything about it, talk about it, or do any related paper work.  Well except for this post. 

I hope we get some info next week, this we know he has autism but are waiting on therapy is kind of weird.  Oh well.

Tuesday, May 28, 2013

Mile Stones

So everyone who have kids knows what a developmental mile stone is.  Whether it be walking, eating solid foods or talking.  Each child is expected to reach these goals in some acceptable time frame.  Now I don't know how we decided which milestones were worthy of note but we all know we looked at our kids and that calender and made sure they were meeting their goals.  And if our kid was a little slower than the kid down the street at say talking, maybe we brought it up to the doctor at our next visit. 

All of these above miles stones and several others are things we all take or took for granted.  Sure my kid will be able to roll over, sure he will walk, sure she will crawl.  Well the truth is all these milestones don't have to happen.  There is no law or rule that says your kid is going to do all of these things at any given time or perhaps ever.  Its okay even.

When your child is born we all bring it to breast or give it a bottle within the first hour of life.  What if I was to tell you that some kids fail this mile stone.  As it turns out Sam failed it we just didn't know it at the time.  It turns out the ability to swallow is a major deal and not every one can do it.  There are cool tests called swallow studies and they have the kid drink barium to see if they can keep it out of their lungs.  Sam couldn't keep it out of his lungs so he had HAD being the important part, an unsafe swallow.

So everything he drank had to be thickened with xanthum gum so that is was heavier and he could control it better and swallow safely.  We have a huge tub of the stuff in our fridge and tons of little travel packets in ever pocket and purse so we can thicken his drinks. 

Not only did we have to worry about drinking but when he was smaller we had to thicken his Tylenol and really get on his brother if he splashed in the bathtub to much cause he would aspirate that too. W e had a swallow study not to long ago that he sort of passed but not really.  They said be careful and have him drink slowly.  And we were.  We started letting him drink out of a straw with less or no thickener becuase the flow is more controlled with a straw.  We started using less Xanthum gum in his drinks so it would be thinner for him.

Well for the last couple of days I have not been using any Xanthum gum at all and his lungs sound great!   My kid can finally swallow thin liquids :)   Its just one more amazing bodily feat that I didn't know to be thankful for.

Monday, May 27, 2013

Happy Memorial Day

Last night my dad called me on the phone to ask if we wanted to go swimming at his brothers pool.  I asked the kids and I got a YES!  This morning we were all excited to go to the pool.  I went to the store early so we could be ready to go on time.  As I was on my way to the store I noticed they were setting up for the Memorial Day Parade, which I had forgotten about.  Oh well I thought, we are going swimming this afternoon so it's all good.

A few miles further from the parade and the phone rings.  Its my dad saying there is a change in plans and long story short we aren't going to the pool today.  This will teach me to tell my kids something fun is going to happen later.  I just felt so bad, like I had ruined the day which of course I hadn't but anyway.  I noticed that its only like 10am so maybe I can swing home and fetch the kids and still make the parade since we can't go swimming.  So I call Jeremy and tell him to take Max to the bathroom and grab some jackets cause we are going to the parade.  I pull up to the house, fetch the kids and away we go.  We arrive in down town at about 10:15 just to see people getting up and leaving the parade.  CRAP!

So I turn the car around I drive home.  On the way we see a garage sale.  We are a big garage sale family so I new this would perk the kids up since we missed the parade, I had yet to mention we aren't going swimming either.  So we are looking around at the garage sale and all of the sudden I hear Max say "i'm peeing".  I say why? and he says I don't know.  Then I get the giggles, really bad.  Did all that stuff really just happen and now my kid is peeing in some random persons garage?  Really?  Jeremy got in trouble for this one really since I said "make sure he pees before the parade"

So we go home and get new pants for Max and head for the grocery store to shop as a family.  You give the kids a free chocolate cookie, a banana and check out the fish dept and they forget the rest of the day even happened I guess.

We got home had lunch and realized both creatures needed naps so we got that out of the way and then had the task of figuring out what to do for the rest of the day.  The weather is crappy so nothing outside, no indoor play places were open either.  We decided on bowling.  First I had to have the "can Sammy do this thought"  but I couldn't think of a reason why he couldn't at least try to bowl so we went ahead with our plans.

As you can see they have this ramp that you aim where you want to ball to go therefore letting younger kids try bowling.  Max has done this a handful of times and really likes it.  This was Sam's first attempt at bowling and as you can see he beat his brother by a pin.

We came home had dinner and made banana bread.  They loved it.

Thursday, May 9, 2013

A Day Out With Thomas

We were awesome parents this last weekend at took the kids to A Day Out With Thomas.   Its an event were the kids get to do various Thomas related activities and actually ride on Thomas.   It was at Greenfield Village this year which is only about a 45 min drive from our house.  

We decided to take a picnic lunch since I was starting The South Beach Diet and I didn't want to cheat.  I was worried the kids wouldn't want to sit and eat right after we got there but we all sat in the shade and had a good lunch before the fun began.

This is the front on Thomas.  He is huge.

 Whats a Thomas event with out lots of train tables.

 We had some sharing issues here, but it was a cool set up

Lego Thomas

 They had a gift shop obviously  and I was happy to buy the boys some sort of suvineer.  They had these great big Mylar Thomas balloons that the boys were very excited about.  Only problem was they were $10 each for a balloon.  I know they were cool and all but $20 for 2 balloons not gonna happen kids.  We settled on some cool Thomas shades.
 A nice lady took our picture while we rode the train.
You could go to the train after your ride and get your picture taken.  Sam couldn't take his eyes off Thomas, it was very cute.
 The hundred year old carousel

And Sir Topem Hat

We had a really good time.  The boys were on their good behavior and it went very well.