I WON...AGAIN

There is this AMAZING company called 4moms!

It was started by 4 moms, hence the name.

They invent and make 4 of the

COOLEST,

AWESOME,

MUST HAVE

baby gear!

On their website, they have a place to "Share Your Story".

A couple weeks before Cooper had his surgery,

I shared Cooper's story, as a means to help raise dwarfism awareness.

The next week I got an email with the subject line,

"YOU HAVE WON A mamaRoo!"

I COMPLETELY forgot I even shared his story.

Winning a mamaRoo was the VERY LAST thing I expected.

As you can imagine,

seeing that email,

I was beyond excited!

I didn't say anything to Zane when I shared Coop's story,

so he was completely shocked that I won.

He kept asking me what a mamaRoo was.

I went back on their website and chose which print I wanted,

and placed my order.

My mother-in-law found the box on my doorstep

the morning after Cooper had his surgery!

Once we got home,

loved on Hunter and Paizlei for a while,

showed my Mom Coopie's incision,

we got down to business putting the mamaRoo together.

Cooper LOVES IT!!!!

So what is a mamaRoo?

A mamaRoo is not a baby swing,

or a baby bouncer.

The seat adjusts from a reclining/laying down setting,

to a sitting up setting.

It has the movements like what a Mommy makes

when she is standing up bouncing her baby,

or rocking side-to-side.

It also has these other settings:

car ride,

kangroo,

ocean wave,

tree swing,

and rock-a-bye.

It doesn't move like a swing.

It doesn't bounce like a bouncer.

It's movements are soft,

they don't aren't "jerky".

They are "natural"

Here are some pictures to show you the mamaRoo I won,

all because I "Shared Cooper's Story"!

 It is electric powered, has nature sounds, and an iPod dock.

 Can you tell he LOVES IT?!

Me, my sweet Cooper, and the mamaRoo!

Sleep Study, MRI and ENT

Just a little note...this is a VERY LONG post!

On October 11 & 12, 2012, Cooper had a bundle of pretty big appointments up at Primary Children's.  Because he has to see so many different doctors for his achondroplasia (most common form of dwarfism), and because we live 2.5 hours from Primary Children's Medical Center, it's easier and more cost effective to schedule as many appointments in one trip.  This specific trip, Cooper had a sleep study, a MRI with general anesthesia, and an appointment with an ENT.  Here is a breakdown of each appointment and the results from each appointment.

Sleep Study

In achondroplastic babies and toddlers (that's all I have researched since it where Cooper is at/will soon be) sleep apnea issues are very common.  Most apnea issues arise because of other problems in their anatomy, so it's common practice for doctors to order sleep studies.  Cooper had his sleep study on Thursday, October 11.  Going into it I had absolutely no clue what to expect.  Something I hadn't done any research on.  In my mind, I thought they just hooked him up to a few monitors and watched him sleep.  Oh no!  It was SO MUCH MORE.  Once we were settled in our room, 2 sleep techs came in and started setting him up.  They put sensors on his feet, a couple places on his teeny tiny right leg, I think there were a couple on his arm, 6 or 8 on his tummy, chest and sides and one or two on his back.  And then there was his head and neck!!!  I completely lost count after 8 sensors.  Poor "Little" man had SO MANY sensors and wires on his head, I felt bad for him.  They they wrapped a heart monitor around his chest, and another one around his tummy.  AND, they put a sensor in his nose that looked like a nasal cannula for oxygen, except this one was so small, and it had a little sensor that came down over his mouth, and it was a dark blue color.  Once they had him all hooked up, they put a mesh "cap" over his head to hold the sensors and wires in place.  Poor baby, I felt so bad for him.  He looked so uncomfortable.  And cry!  Oh did he cry!  He isn't one that really cries a lot, so I knew he was uncomfortable.  Once he was all hooked up, I swaddled him, fed him and got him asleep.  Bless his sweet little heart, he slept really good until about 4am.  He was awake enough to know he didn't like everything on him.  He was so uncomfortable and fussed until the sleep tech came in about 5:30 and ended his study.

About 2 weeks later, I got a call from Dr. Carey, Cooper's geneticist (the doctor who ordered all the tests).  He told me the sleep study showed mild to moderate central sleep apnea (CSA), which is where the brain doesn't tell the body to breathe.  Dr. Carey told me the ENT would call me and go over everything in more detail.  The next day, the ENT's office called and informed me Cooper's study did show mild to moderate central sleep apnea, but it also showed severe obstructive sleep apnea (OSA).  OSA can be caused by a lot of reasons, like enlarged tonsils and adenoids.  In achondroplastics, tonsils and adenoids are definitely issues, but one bigger issue is compression of the spine (CSA can also be caused from compression).  Because of the CSA and OSA, the ENT started Cooper on oxygen when he sleeps.

Two days after the ENT called, Intermountain Home Health came and set Cooper up on oxygen and a pulse oximeter to monitor his oxygen levels.  We don't have the typical HUGE oxygen tanks in our home.  Instead, we have an oxygen concentrator.  Basically, it pulls room air into the machine, circulates it through its filters, and it comes out the cannula as pure, 100% oxygen.  The ENT didn't give us an amount of oxygen he needs to be on.  Instead, we adjust the amount so that his oxygen saturation stays about 98%.  The amount is usually right at 1/2 liter.  The first few days were awful.  He had a really hard time sleeping through the night.  He's been on the oxygen for about 2 weeks, and we are back to him sleeping almost through the night.  He usually wakes up once.

Another sleep study will be anywhere from 6-12 months.

MRI with General Anesthesia

After Cooper's sleep study, he had to check into same-day surgery for his MRI.  Because of how small Cooper is, and the fact that babies and little kids have a hard time holding still for any amount of time, Dr. Carey ordered an MRI with general anesthesia.  The MRI was checking Cooper's head, brain and upper spinal cord for excess fluid.  In Cooper's initial appointment with Dr. Carey, he ordered an ultrasound of Cooper's head to check the ventricles for hydrocephalus (fluid on the brain and in the ventricles), which he did have.  The MRI was ordered to get a better look.

Once Cooper was all checked in, weighed, measured, head circumference down, vitals, dressed in an extremely LARGE hospital gown and pants, we met the anesthesiologist back in same-day surgery.  There he went over everything they were going to do.  I mentioned to him the sleep tech that performed the sleep study the night before, stated she noticed central sleep apnea.  That's when he told me he was going to put Cooper on a ventilator just as a precaution.  My heart sank.  It was so traumatic for me.  I NEVER in a million years dreamed my kids would be put on a vent.  After having Paizlei in the NICU, I saw so many babies that relied on vents to keep them alive, that was where my mind was.  I was thinking they were putting Cooper on the vent to keep him alive.  It was all I could do to hold it together.  The anesthesiologist saw my fear and quickly told me he was using it just as a precaution and that there was nothing to worry about.  Shortly after talking to him, a nurse came and walked us back down to the first floor to MRI.  I got my sleeping Cooper out of his carseat and laid him on the HUGE table.  The anesthesiologist put a mask on Cooper's face that was blowing oxygen, but there was also a gas that put my sweet baby to sleep.  It was seriously the most HORRIFYING moment of the whole appointment.  I was holding Cooper's hand because he was fussing, and all the sudden his hand just went completely limp.  I was then told to give him a kiss and tell him I will see him shortly.  That hour was THE LONGEST HOUR EVER!

About 75 minutes later, the receptionist in the same-day surgery waiting area called me and walked me down to recovery.  Because of Cooper's CSA, he had to be in recovery the PACU for 4 hours where he was monitored very closely.  When I first rounded the corner to where he was at, I could hear him crying, but it didn't sound like him at all.  His voice was so hoarse.  I started to cry.  He was having a really hard time coming out of the anesthesia.  He didn't like how funny he felt.  I'm sure a lot of his crying was because his hoarse voice scared him.  Once I got him settled down, the nurse gave me some glucose water to feed to him since its easier on his tummy.  Within about 45 minutes, he drank 2 full 2 oz bottles of the glucose water.  By the time Cooper was released, he drank 2 full 4 oz bottles of breast milk.  Unfortunately, no one would tell me what they found with the MRI.

The same time Dr. Carey called with the results from the sleep study, he gave us the results from the MRI.  He informed me that Cooper had a lot of fluid in and around the brain/head and fluid in the ventricles and that his ventricles were very enlarged.  He also informed us that Cooper had "pretty significant narrowing" of the foramen magnum and C1 vertebrae of the spine.  Before he called, he spoke with a neurosurgeon to make sure he didn't want to see Cooper immediately.  The neurosurgeon wanted to see Cooper the next week.

ENT

Because of the straight ear canals in achondroplastic individuals, ear infections are VERY common.  From August to October, Cooper has had 4 ear infections. After talking with Dr. Carey, and our doctor down here, we thought it was best to get an appointment with the ENT.  At the time of the appointment, we were only on ear infection number 3.  Dr. Meier pulled out a large amount of wax from Coop's ear in order to see further back in his ear.  He also blew a little air in his ear to see if there was vibration.  It took several times before he saw the vibration he wanted to see.  The ENT wanted to wait to see what the results were from Cooper's MRI before he scheduled an OR to put tubes in his ears, AND to wait for one, yes ONE more ear infection.

Upon getting the results from the MRI and the sleep study, we scheduled another appointment with the ENT the same day Cooper sees the neuro.

Needless to say, Cooper's appointments this go around were very successful in finding issues that need to be addressed and having those issues addressed.  It was a VERY tiring, VERY emotional two days.  I learned so much about achondroplasia, Cooper's anatomy, treatments for Cooper, surgeries Cooper will have to undergo.  It also made me so grateful to have a children's hospital fairly close, a hospital that is one of the BEST hospitals in the intermountain west, that offers such amazing services and has GREAT staff.  PCMC and their staff are so amazing, kind, caring, understanding and compassionate.  It also made me so grateful to Zane for being able to stay home with Hunter and Paizlei those 2 days.  Although it was a crazy two days, and extremely hard for me to be away from Hunter and Paizlei and Zane, it all worked out in the end.


PS...thank you Uncle Kent for coming over on your lunch break and assisting Zane with giving Cooper a priesthood blessing.  Through this whole experience, my testimony of prayer was strengthened.  I know that Heavenly Father was with me, giving me strength to make it through the rough parts.  And He was especially with sweet Cooper.

Here are some photos from Cooper's appointments.

 This was Cooper all set up and ready for his sleep study to start.  Do you see what I mean about all the wires?  He seriously DID NOT like it!

 The next morning after the sleep study.  He was as cleaned up as a washcloth could clean him up.  He had goop all over.  It was so gross!

 This is the computer set-up and all but one of the machines Cooper was hooked up to.  The lines on the computer, yep, that's Cooper's sleeping pattern.  Pretty crazy!

 PCMC is such a neat hospital.  Every floor and department is decorated differently.  The sleep study room we were in had these adorable butterflies going up the wall...

 ...and a fish painted on a ceiling tile.

 I'm getting Cooper dressed and ready for his MRI.  This is in same-day surgery check-in.  He didn't really care for the ID bracelet on his foot...and the nurse put it too tight.  I made them make him a new one and fix it.

 The new ID bracelet!  I LOVE LOVE LOVE his teeny tiny legs and feet!  I think they are so cute!

 These are the extremely LARGE pants they gave me to put on Cooper.  I had them up under his arms, and they still hung WAY below his feet.

 My "Little" man all dressed and ready to go.

 Awe, my sweet Cooper.  This is where he was struggling so hard to wake up.  He would sleep for a few minutes, then wake up crying, hear his hoarse voice and start crying even harder.  Yes, that is the same mask they used to put him to sleep with the gas.  See, it was very traumatizing for me...I can still remember it weeks later.

Still doing blow-by oxygen.  A lot better from when he was first sent to recovery.  He was resting a lot better.  I had just got done feeding him his 2nd bottle of breast milk.  It was shortly after this photo was taken, that he was released and we went to his ENT appointment.

More posts to come about Cooper's neorosurgeon and ENT visit to come.

Paizlei's Surgery

On December 7, 2011, Paizlei had exploratory surgery and a colonoscopy to see if they could figure out why she can't go pooh.  After the surgery, I was so upset when her doctor came to talk to me and tell me that they found pretty much NOTHING...nothing the naked eye could see.  They took about 10 biopsies from her tummy and her rectum and colon.  The findings of the biopsies gave very few reasons as to why she can't go.  One, they discovered she has crypt architectural distortion in the colon and the rectum.  The doctor said there really isn't anything they can do for it, and hopefully she will out-grow it.  That also states that she doesn't have Crohn's Disease.  They also found that she has mild increases in inflammation, which is consistent with food allergies, but they couldn't pinpoint WHAT foods she is allergic too.  The doctor did confirm that the inflammation is NOT consistent  with lactose intolerance and Celiac Disease (which our family physician said Celiac's most common diagnosis is with a biopsy NOT a blood test, but that if it is bad enough, it can be detected in the blood).  The doctor said it would be really difficult to pinpoint the allergies, but I can keep a journal of everything she eats, or we could just wait and let it play out and see when the food allergies present themselves in a more pronounced way.  I have tried to keep a journal, but she is a little sneaky and will go into the kitchen and help herself, so it's almost pointless.  I am going out on a whim and hoping and praying the allergies will present themselves.

The day after she had the surgery, Paizlei's skin was playing games with me.  One minute she was so pale, it scared me...the next minute, she was so flushed, her cheeks were bright red.  She had a low grade fever most of the day that wouldn't break even with Tylenol and Motrin alternating every 3 hours.  By 4pm, I was freaking out, I called up to PCMC and was able to talk to the doctor.  He said he was going to call a couple of prescriptions into our pharmacy for us and talk to anesthesiology.  He called me back not 2 minutes after I hung up with him.  He advised me to take her into the nearest ER immediately because he feared she was having an allergic to the anesthesia, or that she had some internal bleeding from the biopsies, or she had contracted an infection while at PCMC.  Freaking out even more, I dropped Hunter off with Zane's amazing Mom, and we went immediately to the ER.  His fears were confirmed, she was having an allergic reaction.  It just so happened our family physician was also on in the ER that night...thank goodness, because he knows EVERYTHING about Paizlei.  They gave her a shot of an antibiotic, just to be on the safe side, if she did in fact contract an infection, the antibiotic will start working fast.  Paizlei also got a dose of Benadryl for the reaction.  I was told to watch her very close for the next couple of days and to continue giving her the Benadryl for 2-3 days.

I was so impressed with how great everyone at PCMC was.  They were all so friendly, explained everything, made sure Paizlei was going to be comfortable, and that I was going to be comfortable.  I thought it was so awesome, they put her to sleep with sleeping gas BEFORE they gave her the IV.  It was so peaceful...there was no holding down a VERY strong toddler, while she was fighting because they were giving her an IV.  They poked her once in her foot and got the IV in on the first try.  And, they gave her Versed before they took her back.  And they let her take her beloved "Piggy Bug", aka lady bug Pillow Pet, back into the OR.  Our experience there was so great, I wouldn't hesitate going back.  

 My sweet little Paizlei coming out of the anesthesia.  She didn't like how it made her feel.  She was so uncomfortable.

When they wheeled her into surgery, she got to ride in a wagon.  When she woke up, all she cared about was riding the wagon out to the car.  She kept crying, "I want the wagon!", "Where the wagon go?", "Me go in wagon!".  She was beyond happy when she got to rid the wagon out to the car.  She was so cute.

Pregnancy Update - Week 14-15

It's completely amazing to me how this pregnancy has been, for the most part, calm, compared to my pregnancies with Hunter and Paizlei.  I have had my fair share of morning sickness, but have been able to keep it at bay with Zofran.  Thank goodness, because I really didn't want a repeat of my pregnancy with Paizlei.

At my 12 week appointment, so far, I have only gained 6 pounds.  I was a little concerned about it, because at my 8 week appointment, my doctor said I had gained more weight that I should have at barely 8 weeks.  I have started to retain a little water in my feet and face, both of which, I can feel.  Kind of makes me nervous for early onset preeclampsia.  I KNOW that was a HUGE risk when we decided we wanted another child.  My BP has also gone up a little bit, but nothing alarming.  I am usually right around 112/70.  At my 12 week, I was at 122/80.  I was also able to hear Baby's heartbeat.  The first time in the office.  The only other time I heard the heartbeat was at the ultrasound, which was 176.  At my appointment, the heartbeat was 167.  My doctor is guessing Baby is a girl based on the heartbeat.  He guess a boy with Hunter based on heartbeat and a girl with Paizlei based on heartbeat.  Zane says it's a girl as well, and he too, has guess right both times.  Me, I am not guessing.  All I want is a healthy, full-term baby.  Keeping my fingers crossed and my prayers for that.

As far as cravings go, I think that's where I have the most difficult time.  I crave EVERYTHING!!!  I saw a commercial for Taco Time and I started craving a crisp chicken burrito with ranch and mexi-fries.  Last night, I saw a commercial for Arby's, since then, I have been craving curly fries.  One craving that has been common with all of my pregnancies, I always crave a yummy pastrami sandwich from Subway.  I also crave fruity things...my favorite craving is an orange Julius, and any flavor Cremies.  It's a good thing the only thing I can get here in Gunnison is a Subway and the Cremeies and make my own orange Julius.  I know that weight gain would be A LOT higher if I lived in a bigger city.

I just barely started to feel movement this week.  I totally forgot what an amazing feeling that it.  Knowing there is a little life growing inside of me, then being able to feel movement...INCREDIBLE.

My Melt Down and My Fight

Often times, a lot of people give advice on how to raise a child and how to discipline a child.  I get told quite frequently from people who are complete strangers, on what I doing wrong with my son.  What most people don't realize, is my son is a very special person.  What may work for your child...or for any normal child, does not work with Hunter.  I have been told to put him in time-out, put him in a corner, put him in his room...none of these, and I mean NONE of these things work for Hunter.  I can do them until I am blue in the face and it doesn't do any good.  Until you have had a child with PDD, ADHD and SID, you have NO IDEA what it is like.  You have NO IDEA just HOW hard each and every day is.  You have NO IDEA of the FIGHT one parent has to go through to get the help their child needs.  And, you have NO RIGHT to judge me for putting my child on a medication that DOES in fact help him...ten-fold.  Those who have been around Hunter when his medicine wears off, and have actually seen the POSITIVE DIFFERENCE Ritalin makes in him, know exactly what I am saying.


With that being said, I will move on to the reason behind my post.  Bed time is a particularly difficult time for him.  Most nights, his body is ready to shut off, but his mind/brain won't.  His mind/brain is racing.  To give you a short example of this, his mind/brain wants him to run, jump, play, throw things, be outside.  However, his tiny body is tired and just wants to go to bed.  When I look into my sweet Hunter's BIG beautiful blue eyes, I see this and it breaks my heart.  I can see how completely frustrated he is and there isn't a darn thing he can do about it.  Because of this, I have made his night-time/bed-time routine pretty strict.


~6:00pm - Dinner
~6:30pm - Bath time
~6:45pm - Quiet time
~7:00pm - We go down to his room and I play trucks for him to help his mind unwind.
~7:05pm - I tuck him in his bed, read him a story or two.
~7:15pm - Make sure he is "snug as a bug in a rug" (a little thing I have done since he was a baby), turn the light out and lay down with him, sing a few songs to help his mind relax.
~7:30pm - I tell him it is time for him to go to sleep and I get up, tuck him in a gain, tell him I love him and to have a good nights sleep and give him a kiss goodnight.  I leave the room.


This is our routine each and every night.  Some nights we get a little of schedule, but everything in the routine goes in the same order.


Last night was an extremely rough night.  Nothing went as planned.  Bath-time was a joke.  Water everywhere in my bathroom.  I slipped on the water and feel on the hard tile and used my arm to break the fall...surprised I didn't break it.  Everything fell apart after this.  I couldn't get either child to cooperate and I was losing my patience...my cool.  By the time it was time to go to bed, I was done.  However, because I know it helps Hunter, we played trucks, I read him 2 books, laid down with him for 15 minutes, then left the room. When I left the room, I was certain he would go to sleep, because I knew just how tired he was.  His mind/brain had a different agenda.  I hadn't been upstairs for 5 minutes when he was throwing cars, trucks, tools at his door.  I stop cleaning the kitchen, go downstairs, let him know throwing his toys is unacceptable and if he doesn't quit, he will loose his cars.  I proceed to put him back in bed, he tells me he needs to go potty.  We come upstairs so he can go potty, even though I know its a ploy to get out of his room, something we do constantly.  I get him back down to his room, tuck him in...snug as a bug in a rug...turn his light out, give him a good TIGHT hug, kisses and tell him I love him.  I shut the door, and walk back upstairs.  I was back in the kitchen and it starts all over again.  By this time, my patience is completely gone, however, I try to keep my cool.  I remove his cars from his room, tell him next time his tools go.  I tuck him in, do our little snug as a bug in a rug thing, turn his light out, give him a good TIGHT hug, kisses and tell him I love him.  This time, I'm not even to the stairs, when he starts throwing things at his door.  I go back to his room, pick him up, sit down on his bed, and hold him tight.  He is squirming, trying everything he can to get out of my grip.  I tell him, as soon as he can stop squirming for 5 minutes, I will put him back in bed.  By this time, I have had everything I can have.  I am done.  I let him know, he needs to go to sleep, or he will lose all of his toys.  After turning the light out, coming upstairs, he started in again, except he was kicking his door.  I was done.  I walked outside for a few minutes to get some fresh air and try to calm myself down.  I came inside, heard him kicking the door and screaming.  The tears started to roll.  I couldn't handle any more for the night.  I walked downstairs, told Hunter, enough is enough.  He needs to go to bed...all the while, I am crying and he can see it.


I have NEVER let my kids see my emotions...something I told myself I would never do, because I don't want my kids to think I am weak...not sure why I have a few of them seeing that, but I do.  So imagine how, not  only upset I am that I can't get my son to go to sleep, but the fact that I let my son see my emotions.  I was in the middle of my very own melt down.  After fighting with Hunter for over an hour to go to sleep, to quit throwing things at his door, taking his beloved toys away, I gave up trying.  Probably not the best thing to do, but I didn't know what else to do.  As he was in his room crying, I went back outside and cried myself.  I felt like a complete failure.  I felt like I was failing as a mother to my son.


Incidents like this, I feel completely alone in dealing with Hunter and his PDD, ADHD and SID.  I KNOW with every part of my being, he was acting the way he was because his mind/brain doesn't function like most kids.  But, at the same time, I just couldn't understand why MY son was the one chosen to have to go through these things.  Why?  When I am frustrated, I can usually call my Mom and ask her, as she raised 2 kids with ADHD.  She always gives me the same response, and I know with every part of my being that she is right.  I always ask her why couldn't Melanie or Ginger (my sisters) have been chosen, why did it have to be me?  Her response is always, "Because Melanie and Ginger couldn't handle it.".  She isn't saying that to degrade my sisters in any way.  I asked her to clarify what she meant.  Melanie works full-time, therefore she has limited time to spend with her "little man".  And Ginger...there is just NO WAY she could handle it.  For those who know Ginger, you will know why my Mom told me this.  My Mom's response is so true.


I'm not looking for sympathy.  I'm not saying I feel sorry for myself.  Sometimes...most times, I do this all by myself, as Zane is working at the jail and farming, since it's farming season.  He is NEVER home to help me, so yes, I DO DO THIS ALL BY MYSELF...hence the reason I feel completely alone in dealing with it.  I have done NOTHING but FIGHT to get my son the help he needs.  It was a HUGE FIGHT to get him on the Ritalin that he so desperately needs.  Now, I have to FIGHT to get him an OT to help with his SID issues, to teach him to focus his energy on things other than throwing, kicking and screaming.  And, yet again, I am doing this FIGHT all by myself.


Last night, as I was struggling with my emotions, after Hunter finally went to sleep; still in tears, still beating myself for showing my emotions to my son, I went on Facebook and did a search for Autism, as his diagnosis of PDD is, in fact an Autism Spectrum Disorder.  I came across such a WONDERFUL group of mother's like me.  I let my emotions out on this forum.  And the response I have received has been so incredible.  I felt so alone last night.  Until I started reading the responses from complete strangers, mothers who are going through the same things I am going through.  It was absolutely wonderful to see and read how so many mothers are going through this same fight.  They offered so many great and wonderful words of advice, comfort and strength.  All being things I need to see/read/hear.


Sometimes, Facebook is a good way to connect with other people.  I have looked and looked and looked for support groups in Utah...EVERYWHERE, and I have yet to find one.  This group of Mother's I found on Facebook, has given me a new ounce of hope.  A new look and different perspective in this fight for my sweet Hunter.  I'm NOT going to give up this fight.  I WILL FIGHT for EVERYTHING for my son.  I will STOP AT NOTHING so he can get the help he needs.  If I can't find an OT down here, and I have to go up to the University of Utah or Primary Children's Medical Center to get him an OT, I WILL.  I WILL give up EVERYTHING I have, for my son.  He IS my light, my world, my joy...he is MY SON...and I LOVE him more than this world will EVER know!!!

Autism Testing Update and Old But New News

Because of Hunter's hospital stay last week, the place we are taking Hunter for his Behavioral Evaluation/Autism testing didn't want us to take him in.  We had to reschedule the appointment for April 1st.  The more I think about it, the more I really truly want to know.  At first, I was in shock.  Now, I am wanting to know:

1) Does Hunter lie somewhere in the very LARGE Autism spectrum?

2) What can I do to help Hunter at home?

3)What programs/support groups are available to help me understand.

So, here's to April 1st.  If we don't get a diagnosis of Autism, hopefully this is something he will out grow.

Old news but new news....As you already know, Paizlei has been sick and has had everything under the sun since Christmas.  The one health issue that has been consistent since she turned one in December, Paizlei cannot go #2 on her own.  We have been giving her a daily regimen of:

17 grams of Miralax

1 teaspoon Colace 2X/per

2 Glycerin suppositories 2X/day

Prune juice in the morning

Apple juice at noon

Apple juice at dinner

Massaging her little tummy

Bicycles with her feet

NOTHING WORKS!!!!!

We are going on 2 weeks now of no bowel movement.  One of the many times I have had her in the ER the last couple of months, one of the ER docs said it looked like Paizlei had an obstruction in her colon.  He showed the x-ray to our doctor and he admitted Paizlei.  Ever since that one ER doc mentioning the obstruction, nothing has ever been mentioned again.  Another ER doc said he thought she had a congenital defect with her colon or her bowels, probably from being early.  But again, that was the only time that was brought up.

This last week has been horrible for her.  Not only has she not felt good, she has also been dealing with wanting to go #2 and struggling so incredibly bad.  You know the old saying "stiffer than a board"?  That is putting it very politely for what Paizlei does.   Her whole body stiffens and whatever is right there for her to hold on to for "pushing" support, watch out.  And then she cries and cries and cries until she is done pushing.  The sad thing, usually there is nothing in her diaper

I called our doctor's office and told them exactly what I was doing, when I was doing it.  I told them I have been doing EVERYTHING the doctor told me to do and NOTHING is working.  I asked them if they could PLEASE try to find a doctor up at Primary's that can help her.  Hopefully when I take Hunter into the doctor tomorrow, they will have a referral and an appointment ready for us.  In the meantime, I have requested EVERYTHING from Paizlei's NICU file, including all the x-rays, ultrasounds and MRI's that she had while she was in the NICU.  Maybe, just maybe, there is something in there that will tell us WHY she is having such a hard time.

Another "A" Word

Just when you think things can't get any worse, you get a slap in the face.


I was thinking we were on the downhill side of my kids being sick.  NOT SO!  Hunter woke up Saturday morning coughing and wheezing.  This is SOOOOO not a good sign for Hunter.  Hunter suffers from Asthma and a narrow trachea.  So we immediately started the breathing treatments.  He gets 6 treatments of Albuterol (steroid that helps open the airways) and 2 treatments of Pulmicort Respules (an asthma medication, anti-inflammatory).  As the day wore on, Hunter's breathing got worse, he was starting to get weak and fevering.  As Zane and I were trying to decide what would be better, give him another treatment of Pulmicort or take him to the ER.  As we were discussing this, Hunter looked at Zane and said "Me go dah er, Dada."  Obviously, that was our deciding factor.


When we got to the ER, the doctor on call was at the nurses desk writing orders for another ER patient and heard Hunter breathing and coughing.  Nurse Heather came in with a special breathing treatment of Decadron and some other BIG long wordy medication.  Before she gave him the treatment, she timed his breathing.  He was breathing at 50-60 breaths-per-minute!  50-60 BPM!!!  Normal for his age is 30 BPM.  Poor little guy, I felt so bad for him.  After the doctor had come in and examined Hunter, Nurse Heather came back with ANOTHER round of Decadron, this time orally.  Hunter also had to have blood work for a CBC and a chest x-ray.  Both of those came back negative for any bacterial/viral infection.


After sitting in the ER for about an hour, the doctor came in and told us he didn't feel comfortable sending Hunter home because he was still struggling...breathing really fast and hard and was suffering from Strider, along with the asthma.  Right after I got Hunter settled in his room, 2 nurses came in with 2 shots, another dose of Decadron and Rosefin.


All the Decadron in his little system really had him agitated.  Poor little guy had such a restless night.  After being asleep for about 20-30 minutes, he would wake up screaming, arch his back, put his finger in his mouth and start shaking uncontrollably.  The first time it happened, I called for a nurse and she said he was having a side affect of the medication.


He woke up Sunday and was my happy little Hunter.  Wanting to move CONSTANTLY.  Throughout the day, we went on many walks, watched a couple Disney movies, played with his cars, colored, walked some more.


The doctor wanted to watch him overnight again Sunday night.  We got home about 9:30 this morning.  He is still breathing a little hard and fast, but nothing we can't control at home.  First thing he wanted to do when we got home was play with his MANY tractors.  The doctor said he was okay to go to school since he isn't sick, so we took him to school a little bit ago.  He was so excited to walk in his classroom and see all of his friends and his teacher.


Keeping our fingers crossed we don't have to do this again.