Monday, February 26, 2018

All About Sam!

Well our story continues!  So after my last blog, nothing got any better.  A few days later Sam began having explosive diarrhea and the next day he was  throwing up.  Now I absolutely HATE throw up.  I can deal with anything else but not throw up.  More often than not, I join the child and throw up myself.  Well this throw up deserved a very special place in hell.  It looked and smelled like cat food!  In fact the only way we knew it had happened was our cat began crying and crying in Sam's room!  It was so odd for the cat to go in there that I went to check and walked in on a scene I will not easily forget....  I think the cat was traumatized also!   Dear Jesus.... I put Vick's chest rub up my nose and covered my face with a mask in order to clean it up!

We took Sam to the ER where we were met with the most odious little doctor man.  He absolutely took nothing serious that Sam had been going through nor any of his special needs.  All he did was to give Sam some meds for nausea and try and send us home without even wanting to wait and see if he could tolerate it.  And the doctor kept calling me 'Mama" in an false Southern way....  Rather than go to jail at that point we took Sam home....and of course he threw up 3x before we got in the door.  I called back to the ER and all they said was give him more anti nausea meds.  It did work and about 4 am we all got to sleep.  (And yes you know I registered a complaint against this doctor!)

 We laid low a couple more days.  Then we began having another issue NO poop....for a week and a half even though he was eating normally.  Again we called our doctor and began trying everything he could tell us to do.  Time kept passing but NO poop!  Every so often I could get a little undigested food out with the use of an enema.  Our pediatrician   and I have a great relationship and I appreciate him and his nurses-I called them so many times and they were so gracious to me.  I followed his advice to the letter.

Our wonderful respite care worker has a Mexican grandma who has helped people out with massage.  She came over and massaged Sam's back in a way that helps his digestive system  (She did it for Selah too)  We also tried a remedy their family has used before- Papayas!  Sam ate a half of one but still no poop!

Then I took him in to see our doctor and I just broke down bawling!  I think I freaked him out.  He's been with us through some rough times and I'm pretty sure he has never seen me cry!  Believe me the floodgates were opened....I told him all the strange little things that were going on with Sam.  When you parent a child with special needs who is non verbal, you really learn to read your child and there were so many things out of the ordinary with Sam.  I told him I wasn't trying to be a drama queen but I felt like Sam was dying from something and no one could tell us why all these strange things were happening.  He sent us for x-rays and labs.  He took me seriously.  Of course the x-ray showed  a very full gastro system.  We tried some stronger things with him -stuff that would have adults running to the bathroom- but to absolutely no avail.  By this point he was sleeping with me and would just groan in his sleep which really freaked me out!

So we went back to the ER, this time we had a wonderful doctor who listened, spoke with our pediatrician and did more x-rays.  At that point there was talk of surgery for a blockage.  He was transferred to Orlando.  While we were waiting he did pass some stuff but it was more undigested food and water.

Sam absolutely was wonderful through all this and so cooperative it was unbelievable.  He LOVED the ambulance ride to Orlando.  He kept laughing with the bumps.

The next day they ruled out surgery and did a full ultasound of all his organs in his digestive system due to a rare chromosomal deletion to make sure there was no tumors.  Thankfully that was clear.  The idea was just to give him a different med and give it some time.  Well as we were being discharged he actually did a normal poop!  At that time it had been almost 3 weeks since there was anything normal.  The undigested food was really worrying me.

Since then he is finally getting back on track.  He is taking a liquid laxative and stool softener.  Now things are a little too good LOL  The challenge will be getting his system to work on its' own!

Sam has always eaten a good diet.  He doesn't have a sweet tooth although he will eat some fruit but hates any type of cake or ice cream.  He literally will gag on sweet things.  It's really amazing.  He loves vegetables and  rarely eats bread.  He will eat any type of bean or pea.  The doctors feel it was not his diet but an after affect of the flu.

Again I will tell you I am so glad he had the flu shot last fall!!!!   I believe he would have been so much sicker if he had not had the shot.  He has had a flu shot every year of his life and this is the first time he or any of us have gotten the flu after having the shot.  This year's flu was rough!  So 6 weeks later we are cautiously optimist that we are done with this!  I can not believe all the strange things that have gone along with this.

His room AFTER I had cleaned up everything!

Opening a birthday present

Birthday boy put himself to sleep on the swing

This was the day after he was born... I held him for the first time and he opened his little eyes.  Up to that point no one had noticed our baby was blind.  He showed me.  This picture used to break my heart but now I can say I'm glad I was the first one to notice.

14 years later getting an x-ray

the famous ambulance ride that brought him so much joy:)

Finally he got to eat!  He was so happy

We were able to take him on the roof top garden one day.  It was very nice out

This toy......Sam loved it I MUST find it!

This girl was waiting on me!  She missed MAMA!  she got right in my lap!

Notice the's wrapped around my arm tightly

We sat on the porch for hours on the swing, this was my view.

Sam outside loves a polar pop!

I love this-took it last night.  He crosses his leg and swings his foot like a grownup man:)

Jon and I both were able to be with Sam in the hospital because his respite care worker stayed with Sarah several times.  And our oldest son gave us his whole long weekend to help out.  Thankfully we got home on Sunday and were able to have some time together before he had to go back on Monday.  Both of those young people are such a blessing to us!!!

I feel like Sam is on the mend.  But I still feel a little worry in my heart for him.  As a younger child he was sick so often and it would progress like this, something would happen and it would just continue on and on with no real diagnosis.  It was an awful way to live.  Until he was about 7 years old I kept a hospital suitcase packed for both of us.

Based on what has happened, we have made the decision to withdraw Sam and Sarah from school.  I'm just not ready to take a chance on his health again.  His immune system has never been good but we've kept him from being sick by keeping him home.  These past week have been very scary.  With him, you never know what could happen and it is just not worth the risk.

So I have Sam and Sarah set up for ABA therapy (applied behavior)  It will be done at home.  We are also setting up for them to do horse therapy at a local farm.  We hope to get both started within the next week or so.


  1. So glad that Sam is feeling much better! You are an amazing mom!

  2. Bright Starts Safari Beats Musical Toy are available on Amazon.... :-) I love how you advocate for your kiddos. I do early intervention and love it when mamas feel empowered!