Compromised Immune System-An Autistic Life

immune

It’s not often anymore that I write about what it means to have a kid with ASD (Autism Spectrum Disorder). It’s been our normal for the last 5 years (it’s actually been our normal Since the boy’s birth- but we have only known for about 5 years – he’s 10 1/2).  For the last four or so years he’s been on a regimen of supplements, not medications. And they have been awesome.  they have worked wonders for the boy. We work closely with his pediatrician and we monitor everything closely.  Now I’m sharing all of this not to get into debates or anything and I will not be sharing the supplements because I am not a doctor.  That’s not really the point of this blog post.

Immune System Attacked

The last six weeks however have been nothing short of a crazy roller coaster ride.  He has been to see medical professionals 6 times in 6 weeks.  That is not normal.   Six weeks ago he came down with a stomach bug, which is rare.  But when he gets a stomach bug he has to go off his supplements which are used to build up his gut health.  The supplements can be irritating on an empty stomach SOOOOO as you might imagine it does not help with the stomach bug.  Well 5 days came and went.  He was getting better and resumed his normal diet over that weekend, but by Monday night he was back to complaining about severe stomach pain, and before bed he tossed his cookies again.  He had  a doctor’s appointment where the doctor determined he had basically stripped the good bacteria from his digestive tract so he was put on a strict diet and had to take probiotics for about a week.  We slowly eased him back onto dairyBut he still could not handle the daily supplements. He went back to school that week there were conversations over the phone with his doctor.

That weekend James was away at his weekend respite.  We picked him up Sunday before church.  He was fine but he had a cough.  By Monday night I had 3 (yes three ) men  in my house who came down with Strep , by Wednesday that would become 4 men.  Bring on 4 rounds of antibiotics.  he finished his antibiotic and all of a sudden we are back to a stomach ache, and a cough that sounds like he has been a chain smoker for 50 years.   Monday morning he went back to the doctor.  Is it still the strep?  Why does he have extreme stomach Pain? (and other tummy issues).   The doctor examines him.  no strep. Post nasal drip. and the stomach thing- she believes it is a bad  yeast overgrowth in his GI tract. And yet a different probiotic was suggested with very strict rules about what to look for if issues should arise.  And a decongestant.

After just one dose of the decongestant I could see a difference.  He had three doses before school the next day and he left feeling better.  However when he walked in from school it was a different story.  He had blood pouring fro his nose AND his mouth.  I had never seen so much blood and I must confess I was freaking out. Because pinching his nose was not working.  I called the doctor.  The gave us instructions about what to look for in a GI Bleed and  said if it happened again to cal the after hours emergency number.  Well at 7 pm on the dot he was standing next to me while I plated their dinner.  He looked at me and said Oh no it’s happening again. I grabbed the phone and called after hours FOUR times and couldn’t get through so I finally called my hubby home and he took him to the ER.  Finally when he was almost home I got through . I explained the situation and they said theat someone would call me in 15-20 minutes. Hubby got home and took the boy.  45 minutes after I made the call a nurse called me back.  I was a train wreck.  I know that nosebleeds that don’t stop ad bleeding out the mouth are horrible things.  Through all of this emails went out to our church family.  People were praying and he gave us quite the scare.

Laughter and Blessings

In the midst of all of this I got a text message from a young mom in our church who was shaken by the whole thin. g She kept me company (via text messages ) for hours.  Her little one was sick too but her momma heart ached for us and our boy.  You see this boy has a very special relationship with many people in our church.  He was just a little over a year old when we moved here and our church has walked with through some pretty tough stuff since then.  Through all of this she made me laugh.  Which was much needed. Let’s just say that we discussed the finer parts of being sweaty…LOL.

Well finally the boy and his papa came home.  Upper nosebleeds with some ulcers.  I decided no decongestant for bedtime.  His nose did not bleed at all at night.  GI bleeds were ruled out though we still were instructed to watch for them due to the other issues.  In the end we discovered that the decongestant suggested by the doctor is what made  these nosebleeds so bad.  We went back to his normal dose.  he still has a cough..not as bad but it is still there and he is doing so much better.  AND he has been on his regular  supplements for 4 days!

We knew the boy has a compromised immune system, but we have never experienced anything like the last 6 weeks. We have dealt with other strange things like a crazy case of athlete’s foot and psoriasis.  Yeah I know !!!! His little body is just susceptible to anything and everything.  We have tried our best to keep him healthy. So when He was finally feeling better by mid-week we knew that he was going to be able to attend the concert we had planned on going to .  You see the boy is a huge fan of the NEWSBOYS.  and I must confess it was great to see him do his crazy dancing, singing and smiling throughout the whole thing!  It was even great to see him dance with Phil Joel after the concert

But that smile says it all. He was in his element because singing and dancing I am sure is his love language.   When he was first diagnosed a lot of wonderful people said “oh he will grow out of it”  Well he hasn’t grown out of it. And to be completely honest it keeps us on our toes (and our knees). God keeps working some very amazing things through this kiddo.  His heart to serve the Lord is a blessing to those who know and love him.  We hope and pray he will always embrace who he is and love people so unconditionally!

I know our journey isn’t over and I have no idea what lies ahead but I refuse to think about it.  I cannot spend my life and his thinking about the what-ifs.  I need to trust that God has his best interest in mind.  And in the midst of it all we will enjoy each and  every moment (MOSTLY LOL). Those who know about the  6 foot high fence and the window and door alarms know what I’m talking about!

So yes one of the many aspects of  an autistic life is a compromised immune system.

 

Spring Has Finally Sprung!- Happy Homemaker Monday

Happy

I honestly cannot believe it.  last week it snowed almost every single day.  It was hard to believe that spring had been around for almost a month!  Well this week SPRING decided to show up which is PERFECT because this week all of our kids are on Spring break.It has been absolutely glorious and the munchkins have been outside playing and helping their dad do all sorts of things.

Well in Honor of spring like weather…

Let’s SPRING into our Happy Homemaker Post!

HAHAHA – ok I’m done Now!

The weather:::. Umm did I mention it has been GORGEOUS!  Mid 60’s and sunny and we are beginning to see various signs of spring.

As I look outside my window:::Bright skies fading into a cadet blue!

Right now I am:::  sitting at the table while the kiddos enjoy a movie

Thinking and pondering::: Many things.  Like gee I better wrap the Christmas presents to take to my parents house tomorrow. Yes it has been THAT kind of winter and yes we will be celebrating Christmas in April!

On my bedside table::: my diffuser and some oils

On my tv::: One of the swan Princess movies (Don’t ask)

On the menu for this week:::

Monday –  Baked Chicken with parmesan butter Pasta

Tuesday –  Away

Wednesday –  Rueben sanwiches

Thursday -BLT’s

Friday -Chili

Saturday – Pork BBQ and Potato Salad

Sunday – Little  Beans Birthday dinner but we have not discussed that yet

On my to do list::: Spring cleaning, clean my craft room and my bedroom and be ready to do some painting in the projects next week.

What I am sewing, crocheting, knitting or creating:::  I am waiting for hubby to get home so I can put the last few pics in His grandparents scrapbook.

My simple pleasure::: Sitting outside reading in the sunshine and hearing the spring peepers

Lesson learned the past week:::  sometimes God wants us to just trust him rather than trying to fix things.  Sometimes we need to just let Him do His work in a situation.

Looking around the house::: Well I need to dust and the kitchen needs a good moping (again) Hahaha That’s what happens when you get April (SNOW) showers

From the camera::

:

Why Yes that is Phil Joel from the Newsboys (Old) and Zealand.  Did I mention that we saw the Newsboys United Tour On Saturday??  NO?  well guess what we did.  He even danced with that handsome boy!

Prayer List::: Well that Kiddo in the picture up there is still having struggles health wise with two trips to see medical professionals this week.  Once to his regular doctor and once to the ER the very next day when he had bleeding from his nose and mouth.  No worries we figured out and I plan on writing more about that in another post this week.

Friends and family going through some tough tough things

Our church building project!

Bible verse, Devotional:::  Today I started the last Chapter of Hebrews.  This study should have been finished in December (or earlier) but sometimes life gets seriously derailed.  I am just now finally finishing many things I started last year.  I have still kept moving forward too BUT I really needed to be able to finish a few things that just got dropped at the end of the year.

Hebrews 13:1-12 NIV

Keep on loving one another as brothers and sisters. Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it.Continue to remember those in prison as if you were together with them in prison, and those who are mistreated as if you yourselves were suffering.

Marriage should be honored by all, and the marriage bed kept pure, for God will judge the adulterer and all the sexually immoral. Keep your lives free from the love of money and be content with what you have, because God has said,

“Never will I leave you;
    never will I forsake you.”[a]

So we say with confidence,

“The Lord is my helper; I will not be afraid.
    What can mere mortals do to me?”[b]

Remember your leaders, who spoke the word of God to you. Consider the outcome of their way of life and imitate their faith. Jesus Christ is the same yesterday and today and forever.

Do not be carried away by all kinds of strange teachings. It is good for our hearts to be strengthened by grace, not by eating ceremonial foods, which is of no benefit to those who do so. 10 We have an altar from which those who minister at the tabernacle have no right to eat.

11 The high priest carries the blood of animals into the Most Holy Place as a sin offering, but the bodies are burned outside the camp. 12 And so Jesus also suffered outside the city gateto make the people holy through his own blood.

For More Happy Homemaker Monday Posts Check out Diary of a Stay at Home Mom

The Three Chef Men-Wordless Wednesday

Chef men

Hey Hey I know I haven’t done one of these in A LONG…LONG….LONG time but I was scrolling through my photos and this popped up.  My three chefs.  I’m not sure what exactly the story is behind this little gem of a photo BUT it spoke to me.   Look at these cuties! All they need is Chef Hats and Chef Coats These are the types of gens you get tp witness when you share an Apple account with your spouse (it’s an accountability thing)   But still isn’t this sweet?   I just love it to bits!

Have an  AMAZING DAY

 

April (Snow) Showers, Leave of Absence, Let. It. Go.- Random Reflections 4-17-2018

Random

April (Snow)  Showers

So while scrolling through Facebook the other day I came across this meme and since there is snow falling today I thought it might be fitting to share:

“April Showers bring snow plowers”.

There was a huge snow plow plowing through feet of snow.    though there are no feet of snow, or inches of snow, I did go to bed to the sound of a snowplow last night salting the roads. and this is what I woke up to this morning….

those little white specks in the air are you guessed it snow.  And we have had quite the heavy snow showers this morning. now it’s not sure if it wants to be snow or rain.  It’s been doing both. I struggle with the cold and gray of New York.  As a girl from Pennsylvania. I am not used to winters like this even  after living here for nearly 17 years.

Leave of Absence

This last week I took a leave of absence from the pregnancy center.  I love it and my clients, but for the time being I need to  deal with smoother things. Somethings good, somethings hard, somethings just a must. I will miss everyone and hope to be back very very very soon.

Let. It. Go.

Our ladies Bible study will be gearing up for it’s next study.  We picked the book a few weeks ago Let. It. Go. by Karen Ehman.  I have already read the book but I think it is time for a revisit.    The subtitle is How to Stop running the show and start walking in Faith.  All I can say is DID YA READ MY LAST BLOG POST?

I’m looking forward to diving into this study soon..

I know that’s not very much but it is what it is.  I hope you have a spectacular day and if you live where it is warm and sunny go out and enjoy some vitamin D for me

 

Life is a Journey

journey

I would like to sit here and think that today begins a new journey but in  reality it’s not new.  Life is the journey.  Yes at times we come to a fork in the road and we need to decide which path to take.  It is the very reason why I chose the theme for my blog to be walking by faith.  Journey is in the subheading.  and as I alluded to in yesterday’sblog post that there were somethings up my sleeve.  I have been thinking and praying and planning for the last few months and I have really needed to wrestle through some stuff. Things like :

Fear

Control

Lack of confidence ( this one strikes me as funny because  that was my word for last year.  ,

Once upon a time….Journey back in time

I struggled with intense fear.  Fear that left me curled up in the corner of my bedroom sobbing.  I had come home to no power and I feared what lurked in the darkness. The unseen,  You know what was there?  Furniture Thats it. .  I was as quiet as a mouse all of the time.  When we moved into a different apartment  a year and a half later I was pregnant with our first son and I quickly learned that the guy downstairs was on the creepy list.  When our oldest was born hubby and I praised God that he was too young to ask questions about what was going on downstairs, on many levels. I was still scared but now I could no longer  be as quiet as a mouse, because I had this youngling…and what do younglings do?  They Cry.  Sometimes a lot. But in my heart my thought was what  if that creepy guy comes up stairs……?  Then one day!  He did.  I was standing at the sink tasing dishes and this insane pounding came . I froze.  He yelled Get out, the Apartment is on fire.  Wait what?   IS this for real?  Sure enough  I picked up our newborn son and scrambled down the stairs.  It was filled with smoke, firetrucks everywhere.

Fast forward….the journey between then and Now

As I look back over the nearly 13 years since that day. I see an on again off again relationship with fear.  What was once an absolutely gripping fear of being alone…as in no one in the same house. I could be alone, actually I really liked being in solitude, just not in the sense of being left alone….and in the ONLY ONE, morphed into a different kind of fear.  Fear of people.  Nope not kidding one single bit.  I was afraid that I was going to get hurt.  There was a time on my life as a young mom where I was convinced that it was my job to be hurt…by people.  It was during that time that I had no friends.  I was home all the time alone and arrows flew at me from every direction..  Now This did not just happen once or twice.  there is a lesson in this for me.  I knew there was but I was DENSE (still am).  So I had to keep learning it over and over and over again.

Right now….on the journey

Continue reading “Life is a Journey”