Tuesday, April 16, 2013

Six Years Ago ..... I almost lost my son....

Every mother's worst nightmare ...  having their child die before their time.  Sadly - so many parents are faced with this exact situation for so many reasons ... medical conditions ...  accidents ... heartless acts by others....

Here I am blessed with my four babies, and as a mom who deals with "special needs" on a daily 24/7, 365 day basis ... for the rest of my life ...  I truly know how blessed I am with them every day.

Six years ago today ....  I had to fight for my son.  I was 9 months pregnant with Nathan.  Our focus was on the upcoming birth.  Noah had been sick for several days.  He had been running a high fever (104) and throwing up, he had been listless for days.  He had been in tears about the pain in his right side.  We took him into the local ER and they had given him to some P.A. (Physician's Assistant - not a Doctor.)

When we had taken him in over the weekend, the nurse had Noah give a urine sample right away cuz he needed to pee and just in case they needed it.  I remember thinking it was really dark and wondering how dehydrated he was.

Noah gets really wigged out when at the doctors.  He's been traumatized with everything he's been through.  To this day - he still has major anxiety ...  every time it's mentioned that HE has a doctors appointment - it's twenty questions on what they will do, who, what, where, and if needles are going to be involved.  Seriously it's twenty minutes at a time of the same question and reassuring him there won't be needles or having to do the harder thing and tell him the truth that we don't know - and we try to be honest with him.  If we're pretty sure there won't be needles - we will reassure him - but sometimes they throw us a curve ball.  So a lot of the time, I say ... I'm not sure.  It's gotten to the point that we don't tell him until we absolutely have to and end up talking in code around our house, and changing said code when he catches on because he will make himself sick ...  with worry ... and anxiety.

So imagine this little five year old boy, who's so sick ... gathering up everything he's got to FAKE being fine. Out of sheer nervousness ... he begs me to read to him, so I do.

The P.A. comes in and takes one look at him ... asks us some questions ... his fever was down thanks to the magic of over the counter meds, and it was like he didn't believe us.  I remember Dennis specifically asking the DR if he could have appendicitis ...  and the P.A. told him ther was no way, that kids that young don't get appendicitis.

In retrospect - I should have - right then and there - demanded to see an actual doctor... but like a moron, I actually believed he knew what he was talking about.

The following day he seemed to be better ...

But by that Tuesday morning, he was back to the 104 temp, throwing up, completely and utterly lethargic.  I had to go two hours away for an appointment with the perinatologist.  I was torn, and crushed.  I didn't know what to do.  Who did I choose?  The baby inside me - who for his own safety needed to come out that week, or my sick child who I knew - KNEW - was in a lot of trouble.

So I did what every good mother would to.  I picked BOTH.  I told Dennis and my Mom, if he needed to be hospitalized, I wanted him in the same hospital I was going to end up giving birth at.

Dennis and I packed up Noah, I made him suck down some ibuprofen and prayed he'd keep it down.  We packed me up - to make sure I'd have everything I needed just incase baby day would be that day.   After it kicked in, he fell asleep and slept all the way there.

We got to the clinic and put Noah in one of the strollers they provide.  We rushed to our ultrasound, and then to our appointment.  It was determined that Nathan would be born on Thursday.  Once we knew what was going with The Little, we rushed down to Urgent Care only to be sent up to the Ped's department where   the Pediatric Urgent Care was.  We were told there was a wait.  A long wait.  I said we'd wait.  They got us back in a room in about a half hour, so I took Noah by myself back there.  Dennis, my Mom, and Calahan waited in the waiting area.  We were put in a room and waited.  The ibuprofen was wearing off.  His fever was spiking again.  All I had was his cup.  He was in my lap, and he was burning up and becoming completely lethargic again.

I could hear people out in the hallway.  Talking about people coming in and there was only one doctor there ...  how things were taking so long.... and I knew we were back there about an hour before the doctor came in.  I figured that I'd just let Noah sleep and I just watched him breathe.  I knew - if anything happened, this was the place to be when it happened.

The doctor came in and was very apologetic.  I gave her the run down of the fever, the throwing up, how we went into the ER, the DR said that he couldn't have appendicitis....

I thought that was a crock of shit, but I wasn't a doctor, I didn't know.  But the doctor looked at me when I told her, and said "Are you serious?" ...  yep ...  "that's not even close to being true."

I was close to tears talking to her, telling her I knew something was wrong with her.  I begged her to do something.

She put her hand on my shoulder and told me that she was going to do everything she could to figure out what was wrong, and she agreed with me.  Something was definitely wrong.  She wanted to run a ton of tests, blood work, x-ray, ultrasound, and she wanted him on an I.V. and she warned me, he might be admitted.  I told her I didn't care as long as he got better.  We'd do whatever we needed to.

I told her that he had been diagnosed with an ear infection the previous week and was on antibiotics - so I didn't understand how he could be so sick.

She promised they'd get to the bottom of it.

I remember how he screamed when they put the I.V. in ...  they had to try several times, I had to leave the room.  Thank God for Dennis...

Those kind of memories are burned into your soul.

We went back to meet with the DR and she asked me if he had diarrhea or not, I told her no.  She then explained that based on his blood work, they needed to admit him.  He had something called C-diff.

Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL), often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.

She told me that if I hadn't gotten him in again - he would have likely been so compromised in 24 hours he would have likely died.

The way she explained it to me was ...  the antibiotics he was taking for his ear infection killed all the bad bacteria from the ear infection, and all the good bacteria that lives in us ... the good bacteria makes the bad bacterias like C-diff .. behave.  Well with that bacteria gone, the bad bacteria's ... like C-diff ... have the chance to misbehave, even though NORMALLY they don't.  In Noah's case, the C-diff decided to have a party in his belly and caused his kidneys to fast track into failure.  That's why his right side was hurting, his right kidney was deeply injured.

One of his kidney's was smaller at birth, and I think it was his right one.  So it was already destined to have issues, I believe.

The fact that she told me he could have died, not only broke my heart but made me SO FREAKING ANGRY.  Why hadn't that P.A. taken us more seriously???

So, Noah was admitted.  And as soon as we got up to the room he started to have the diarrhea.  He was put in diapers to help with that, so he could rest without worry...  they put him on some extremely strong antibiotics that could combat the C-diff, and we all took a sigh of relief when it worked and he was getting better.

For 24 hours Noah fought for his life, and after that it was clear he was getting better.

   By Thursday, even though I knew Noah was going to be okay - it was still the hardest thing for me to do - to leave his hospital room, go down a floor to the maternity ward and have Nathan.  By the time the c-section was done, Nathan was whisked away to the NICU, Noah was deemed okay to go home on this two hour regiment of antibiotics.

I'll never forget being 9 months pregnant sleeping on a bench under the window praying for my child to live.  That's for sure.

And I don't like having such bad memories around the birth of Nathan, but it is what it is, and every year this time I remember what almost happened, and how very truly blessed I am.

Because of this, Noah now has kidney disease.  He has blood in his urine.  It all depends on how much and if there is protein...  but he'll always have to follow up with the kidney doctors and make sure everything stays stable.   

Thursday, April 11, 2013

It's time for an UPDATE!!!

Yes ... the update I've been promising for awhile.  Winter season is usually a tough one for us.  There is a lot of sicknesses traveling through the household.  We had stomach viruses, colds, croup, bronchitis, a major outbreak of pink eye, ear infections, more stomach viruses, more colds moving into the chest and lungs... it was a never ending sick fest here ....      Springtime seems to be the time for an influx of doctors appointments.

So let's get updated....

Calahan has started therapy.  He has never had an easy time dealing with his anger.  He isn't an "angry child" but he has angry outbursts.  I can go toe to toe with him, but he is very self damaging when it's said and done cuz he knows he was in the wrong.  Some of this stems from what happened with his biological father, what he witnessed his bio-dad do ... and what may have happened to him - but we'll never know cuz he was really young and may have it blocked if he could remember it at all.  The therapy has been helping him, but sometimes he gets frustrated.  We realized one day when we were discussing school work that he has some major Post-Traumatic-Stress-Disorder from when he was bullied.

Short version - from 1st grade really onto Jr. High - he was bullied.  It got bad in 3rd grade.  There was one kid who followed him home saying he had a screwdriver in his backpack and he was going to KILL him.    Another day, same kid (I think) followed him home again and yanked on his backpack making him fall.  There were tons of threats.  I addressed all this with the school - they begged me to let them handle it - but each time they did - it was just a matter of .... don't do that, you have detention.... it might stop for a day, then start up ... happens again, I call....  don't do that, you have detention.... vicious cycle.  Jr. High he was chocked, and that was my last straw.  We pulled him out to homeschool him at that point ... then came to WA and he went back into public school ...  the second there was a hint of bullying, it was all over again. Major anxiety and PTSD... even some depression.

He hasn't had an easy life, but he's a smart kid, he's compassionate and he's so loving.

He and his girlfriend have plans for the future, and here they are on Valentine's Day when he met her up at school and gave her a gift.

He also started to see a psychiatrist to deal with his ADHD/ODD meds, and if he should decide he wants to try something for the anxiety and/or depression.

He had a recent eye doc appointment and he continues to need reading glasses.  There are some concerns though, this left optic nerve is bigger than his right by 15%.   This could be a sign that he has glaucoma - but she says it's more probable that it's just the way he's made.  We won't know for sure for awhile.  That's a little scary though.

Noah is doing very well right now.

Dr. M (Noah & Nate's Endocrinologist) says she doesn't need to see Noah anymore unless there are new issues that come into play.  She's really happy with his growth - and especially since he has hit early puberty (she confirmed my suspicion on this) and is having some major growth spurts.  Especially with weight (he has stretch marks - oh dear!)

There is still concern about the growth on his birth mark especially since he's got the new spot on the back of his head.  But we're still keeping an eye on it and going to get him into a dermatologist soon.

So Noah had Physical Therapy evals. I knew that Noah would need it.  The appointment  went good and it was really interesting. The lady who saw them and will continue to ... I like her. She also homeschools. Anyway ... Noah has abnormal tone - a mixture of high and low tone. He has something called Supinated Foot, and he has hyperextensable joints (don’t know what this means?  Think of contortionists… and this is funny cuz he is always so stiff), but not all of his joints are this way - just some. She's thinking of what to do for him, he's perplexing her a bit. (As in if he just needs shoe inserts or what) ... right now she wants him to practice doing five jumping jacks a day - in two steps. Do the jump and hands up motion (rocket ship) pause, and then back down (back together). She says that his ham strings are really bad right now, and his knees have issues.... she says he feels impacts a lot when he walks and stuff.... and a lot of what she's going to do with him is stretches and exercises to just build up his muscles and loosen him up. 

We had his first PT appointment the other day and she said she was still thinking what kind of inserts she thought was going to be best for Noah.   So I guess we'll see.   

Noah also had an eye appointment and he passed with flying colors.  She said that he has a teeny tiny astigmatism but it's not bad at all.  She did agree, though, that he has major allergy eyes.  She prescribed some drops for him.

Nathan is doing okay in growth - he still isn't on the charts - HOWEVER - he is following the RSS growth chart line pretty much right on (which is only on the height chart) ...

Nathan also had a PT evaluation …  I wasn’t sure he really would need it, turns out he does.  One of the reasons why the appointments (for Noah and Nate) were so interesting was because of how opposite Noah and Nathan are.  With Nathan .... he also has abnormal tone (a mixture of high and low tone in different areas) ... He has flat feet (which I knew) ... but he has functioning flat feet - which means the arches are there (at least right now) ... they just collapse. I guess it's called Pronation - from what I've read. It's the opposite problem that Noah has ... she says he definitely has Sensory Integration Disorder - she talked about getting him an SPIO (Stabilizing Pressure Input Orthosis) - she's going to put him through a trail with one to see if it helps him calm down. And she says she definitely feels he needs some Sure Steps (which is the name of the shoe inserts) - which is a thing that will go around his foot to help correct his issue. Other than that - she didn't have much to say about him - she says she's just going to monitor him over the next few weeks.

He had his first PT appointment and she realized she hadn't seen him do some stuff that she needed to - like walk, run and do steps.  She had just been observing him in the room while we talked.  So she did that - and worked on some stuff with him and he did really well.

He had to go through some allergy testing.  He got these spots all over his back and such, and I thought it was Chicken Pox.  But alas, it wasn't.  Noah, Nate & Kaed all got the shots, and Calahan had Chicken Pox when he was 3 years old.  So it's been a long time since I had seen them ... but ....  turns out they were hives.  So Nathan has started a allergy med regiment too.  He went through testing and the only thing he reacted to -really badly - was grass.
The spot on his spine is the "control" spot.   The one on the left side - middle of - his back is the grass spot.

Nathan also had an eye appointment ...  he has trouble focusing on things, so she wants him to get some +1 glasses to read with.  She hopes it'll help him focus better.

Nathan has 3 appointments coming up next week.  Craniofacial Clinic on Monday, Neurology on Wednesday and Urology on Saturday (yes - Saturday!)

The following week he had an appt with the Autism doc and Cardio... and he needs to have labs done.

Not too much going on with Kaedyn.  Just managing his eczema and his allergies.

He also had an eye doctor appointment....  he has something called Amblyopia.  One of his eyes is lazier than the other.  Usually this corrects in infancy and toddler years but with Kaedyn it hasn't completely.  We did notice it when he was a baby ....
 Of course it wasn't always that bad, this was a picture taken a few days later .....
Regardless - this is something he's obviously been struggling with.  She said that glasses are the first step, then there is eye patch therapy - and after that it's surgery.  SO ... let's hope the glasses take care of it.

His eyesight is really bad in his left eye.  It's a little bad in his right.  But his prescription for glasses is worse then Dennis' and imagine what's going to happen as years go by and it continues to decrease.  It kinda scares me.

Here he was in the middle of March - trying on glasses to order them.  He wasn't happy ....

But his glasses came the other day and after a little bit of inital fighting over it - and us telling him a thousand times how HANDSOME he looks with glasses on ... and the fact that he realized he can see better... we really haven't had to fight with him much to wear them.  And he is ABSOLUTELY HANDSOME with them.  He reminds me of a little Jonathan Lipnicki  (Stuart Little) and a little Harry Potter all mixed into one...

The bottom three pictures are of when we were at the eye clinic trying them on so they could be adjusted - he hated them at that moment.   The top picture is about an hour - hour and a half later ....  he's starting to get use to them!   He wore them until about 6-7 o'clock the first night (Tuesday) ...  and said he could see and didn't need them anymore (I think he was hurting) ... and so I put them on my dresser and I told him "you got to put them back on right away tomorrow" and he said "okay" and ran out of my room.  The following day (Wednesday - yesterday) he wasn't up when we had to leave for appointments ... so I put them on the entertainment center infront of the tv and told Cal that's where they were - and according to Cal he put them on without a fight and wore them all day.  He took them off about 7 last night and told me he couldn't wear them to watch Noah and he was watching Noah ... ha ha ....  and tonight - it's 8 o'clock and he still has them on :)  Of course he's taken little breaks here and there through out the day ...

So that's the update I have so far :)  More to come ....  for Nathan ... anyway ....  

100 + Likes on our FB Page!


I am so excited that we have over 100 likes on our facebook page now!  When I last updated (March 31) we had 88 likes.  Now we have 116!   I know that doesn't seem like much, but we're so excited to help share awareness :)

To celebrate ... since I haven't changed either the Facebook Cover OR the FB Pic since I started the page ...  I decided to celebrate with a change of looks....



I made the banner of course :)  I am a mom of many talents ....

Go like our page if you haven't already :)     https://www.facebook.com/myuniqueflowers

Wednesday, April 3, 2013

Light It Up Blue for Autism Awareness!

If you didn't already know .... yesterday was Light It Up Blue for Autism Awareness Day.  I shared some of Nathan's story in the post prior to this one.

Nathan is a brightest shining star in a moonless sky.  He is still a very happy boy but he's so often stuck in his own world.  It's hard to get his attention - he ignores you for awhile.  Saying Nathan ten times doesn't cut it.  No... I have to do the whole "1 ....2.....3...." thing to get his attention.  The whole counting system works with him.  When I count, he realizes that I want his attention right away.  He's constantly sucking on his shirt (as you can see in the above picture) or has something in his mouth.  He went from putting his head down on the floor and turning in circles, to flipping.  He'll flip on anything that he can flip on.  It was the bunk bed, he'd grab onto the boards on the bottom of the top bunk and flip on those.  Splinters were not his friend.  He also flips on the closet rod.  We had one that hung from the upper rod creating a second - lower - rod.  Well, that wasn't for clothes - no - those got dumped on the floor and he'd flip on there.  He had his own uneven bars - only it was one bar...   and currently - we got him a little trampoline ... so he mostly flips on the handles...
Oh right ... and his toes are his FAVORITE part of his body to suck on.  Nathan's favorite thing to do is to be watching videos.  On the computer... and on the cell phones.  He will just sit on the couch or lay on the trampoline and watch videos.  If the computer is available ... he'll be watching youtube on there.  His favorite things are funny Cats, Mario, Yoshi, Kirby and other video game things... oh right, Minecraft and Roblox, too.  He watches walk throughs or silly things that kids do with toys ... whatever he can.

He doesn't flap, but he will rock.  He hides in cupboards and mostly under blankets or in small areas.  When he's really upset, he'll go hide under his bed.  He makes eye contact... sometimes, but I have seen him make less and less eye contact as time goes on.  Usually, now, if I want him to look at me, I have to tell him to look at me.  Otherwise he makes contact for a moment or two, and then looks away.  He is constantly on the move unless he's watching youtube.  When he's watching youtube or when he's sleeping is about the only time he isn't moving.  He won't eat things with certain textures or taste.  He won't eat potatoes, very rarely eats french fries.  He avoids red foods like crazy, spaghetti sauce, ketchup, juice that's red.. if it's pink, he *might* eat/drink it.  The only red thing I've seen him eat is red popsicles.  He isn't a dipper.  He won't dip anything in sauces.  If sauces or dips are on his plate, he'll refuse to touch it.  His go to food is chicken nuggets, especially if they are from McDonalds.  He also loves peppers, carrots, celery, grapes, and bananas.  And Lucky Charms is referred to as "Nathan Crack" .. he will eat Lucky Charms all day long.  Of course, he will only eat the marshmellow..  and might eat the cereal but mostly that gets thrown or dumped on the floor.  Bananas were a huge achievement!  When he started out in pre-school, I told his teacher not to even try to give him bananas or he'd throw up.  Well, I went to get him one day and she pulls me aside and says "So we had bananas today, and we asked Nathan to try it."  I snickered under my breath and asked her how that went.  She said, "well, he threw up."  She smiled at me and said, "next time I'll listen to you."  But we do continue to offer and let him try stuff.  Eventually one day, he picked up a banana and had no problems, now he loves them.

Speech is a huge issue.  He is "non-verbal" ... but I don't like to say that he's non-verbal because he does talk.  He makes sounds, he says words, he likes to sing and carry on conversations with himself.  The problem is that you can't understand him.  If you've never been around him - chances of understanding what he's saying is about 10% ... Family and friends that around him have about a 50% chance.  We understand him mostly when he's repeating stuff we say (that's like cheating though, right?)  ... or when he's giving us a clue (like pointing at something).  He has a few clear words.  A lot of the time though, we have to play twenty questions.  And it's yes or no questions.  It's a process and it royally frustrates us all, especially him.  He has a Pod (one of those books with the pictures in it - where you point to the picture) ... but he doesn't like to use it and it confuses him.  We knew that the best thing for him would be an electronic device.  And so last May he went through the process to get one, and took to it right away ... he was a champ at it in a matter of minutes.  However, after a snafu of the paperwork getting lost in in cyberspace ... and finding out they never got it after months of waiting to hear if he was getting it, and having to resubmit everything - we find out it's been denied.  That broke our hearts.  We're appealing the decision but I just have a feeling that they won't cover it and we'll have to pay for it out of pocket and I just don't know how we're going to be able to do that right now.

So ... that's a little peek into who Nathan is...   he is my superhero :)

We spent today in blue for Nathan.  For Noah and Kaedyn who both have Sensory Processing Disorder (as does Nathan) ...  and for all the other kids we know who are on the spectrum and all those we don't know.

 We are always impressed with those who Light it Up Blue for Autism.

 I leave you with the 2013 Light it Up Blue PSA  :)

Tuesday, April 2, 2013

Light It Up Blue! Today is about Autism!!


Autism is a neurological developmental disorder. Symptoms include difficulty socializing and communicating, lack of eye contact, delayed speech, difficulty reading people, obsessive interests, need for routine, repetitive behavior, poor motor coordination, and abnormal sensory processing.

The symptoms of autism range from severe to mild. There is a lot of diversity among people with autism. There's not just one way an autistic person will behave or act; they are all different. The children you'll work with may become agitated by sudden changes. Some won't be receptive to you at first, since you're new. They may have repetitive behaviors like hand-flapping or rocking back and forth. They might go on monologues about topics of interests, or they might talk very little. Some will react negatively or even have a meltdown over certain sounds, foods, or touch. But like I said, all autistic people are different, so don't expect every child there to act the same.

This is how an autistic person described Autism. 

Autism effects so many people in different ways ....   there are still people out there who don't take it seriously.  

When Nathan was born things were chaotic ...  course, that's all our lives are now, so why not start it out right away with him?  But we brought home this tiny four pound baby (he was 3lbs 4oz at birth) ... and he was so tiny in his crib ...

And his swing almost swallowed him up!

But he grew ....  and he THRIVED .... well, minus the growing part, that was and is an extremely slow process.  He was such a happy baby though - always smiling ...

Even as a One Year old - he was all smiles....

Things started to change around the time that Kaedyn was born, it was after his 18 month shots.  And I know ...  studies show no *real* link to shots, but apparently there must be SOMETHING to it if everyone is still saying it.  Why do so many kids "change" after shots??

Regardless, my super happy - funny - love seeking baby turned into this child who enjoyed spinning around on his head ... hiding in cupboards - showing some major sensory issues...

He started to refuse foods he had previously loved - especially anything with "red" on it...

I can - of course - still get him to smile.  But it's a posed smile now, it's not the true smile of Nathan.  The one that lights up the room and warms your soul.  It's so rare to catch one of THOSE smiles....

Nathan is almost SIX now....  he was diagnosed about 2 years ago  ... and I had to fight for the diagnosis because Nathan does make some eye contact (however it's less and less as the years come and go) ... he has an imagination, role playing with toys ...  (and according to one doctor he say, that means he doesn't have TRUE Autism) ... he has NO SENSE OF FEAR and would totally run out infront of a car without a thought of the fact it could kill him.  He loves animals, but he can get aggressive and mean (especially with animals) and when you explain to him it's not nice - he looks confused.  He is SO SO SO very smart.  But you can just tell... it's obvious.  And it's hard... for all of us....

Today is the day to LIGHT IT UP BLUE for Autism Awareness!!  PLEASE WEAR BLUE today and if you don't share anything about Autism Awareness, at least share it today!!

We'll be wearing blue today!!