Isaac’s Big Fun…a.k.a. “Freaking Out Daddy”

A couple of nights ago, Doug went to Isaac's room to feed him, do his asthma treatment and give him his night time meds.  It's the usual routine of things around here.  He starts around 9 p.m. and finishes up around 9:30.

You'll remember, of course, that Isaac is fed via a g-tube and mic-key button.  This is his button:

Mickeytubekit

The "balloon" part is filled with water and sits inside his abdominal cavity.  The top part sits on the outside of his belly.  When it's time to feed him, we attach this:

Right angle feeding tube

Then to the top of this tube we attach a larger syringe:

Syringe
(we remove the plunger before attaching to the tube.)

Then we open his can of formula and pour into the tube.  As it empties, we refill the tube until his formula can is empty.  Then we use smaller syringes to push his meds in, then we rinse it all down with water.

Doug was at the "formula pouring stage" the other night.  You know, don't you, that special needs children can be perfectly ornery, just like any other child?  Isaac, especially, knows what he can do and what he is not supposed to do, especially during a feed.

Also, just like you and your hubby do not deal with your children in exactly the same way, Doug and I don't do Isaac's feeds exactly the same either.

I always hold down Isaac's arm, the one closest to me, the one that lies underneath the syringe full of formula that I am holding.  Doug does not hold his arm down.  No real reason, he just doesn't.  So, as a result of that, Isaac and Daddy have lots more "uh ohs" than Isaac and I do.

However, the other night, we had an "uh oh" like we have never had before!

Isaac decided it was time to cross his arms, which if you've read my blog for very long, you know he does repeatedly and violently.  It's one movement that brings him great joy! : )

When he brought up his arm, he caught the tubing, which jerked the syringe.  Formula went everywhere!  I heard menacing growls from Doug, so I suspected that there was formula all over the bed and Isaac.

But, then, I heard Doug use a phrase that would have been in poor taste (and very out of character for Doug!) had it been an oath, rather than a cry for help from above!

I called out, "WHAT'S WRONG?"

And Doug replied, "HE'S PULLED OUT HIS BUTTON!"

Isaac had come up under the syringe and tube so hard that it had yanked his button right out of his stomach!!!

I walked in and Doug was holding the syringe, from which was swinging the tube and connected to that was Isaac's mic-key button; and in Isaac's left side, right below his ribs, there was a hole – just a hole!  (That gets to me every time!  I will never get used to seeing that!)

We have spare buttons, of course, and so I sent Doug for water and I grabbed the extra kit, slathered on the surgical lubricating gel and PRAYED that the button would go IN! 

There is always the chance that the hole in Isaac's abdomen will start to close up really quickly.  If that happens, and you're not able to get something in that hole to hold it open, it means a trip to the ER and another surgery to place the button.  Scary thought, that!  And just enough of an incentive to make you move very quickly to get that button in place as soon as possible!

All went well, and the button went in, although I did have to push a bit at the end of the insertion.  We had him all cleaned up and "eating" again in about 5 minutes.

But oh, the adrenaline rush of the moment!  It took Doug a little longer than me, I think, to calm down.  He gets a little more "excited", shall we say, than I do over things like this.  Oh, but don't think he's wimpy and I'm untouchable!  The first time Isaac had a bloody nose – from tipping forward in a rocking chair – I went to pieces and had to leave the room.   Doug just laughed and cleaned him up and kept assuring me that "his nose is not broken!" : )  We all have our strengths, amen?

Normally, this situation with the button wouldn't have happened.  The balloon that is filled with water holds the button very securely and usually the stomach itself will stretch, but the button stays put.

Evidently, the button had been slowly losing water.  This happens when the stomach acids wear a microscopic hole in the button, or if there was a flaw in the button to begin with.  He's had the button in for several months, so I think it was the first reason that caused it to lose water.  When I had time to examine it later, the balloon was almost flat.  It's a wonder it hadn't come out before this.

So, Isaac had an evening basking in lots of attention – Mommy and Daddy came to help feed him!  Doug gave his adrenal system a good work out and I got a great story for my blog!

And…all's well that ends well, right?  New button is working like a charm, and he's not even sore around the site.  Praise the Lord!

Here's to a calmer evening…
Alesha

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All About Isaac

Isaac’s Adoption Story

 

Doug and I were married in 1988, just 3 months after we graduated from college.  We had dated off and on during our college years, soon became best friends, and then, much to my surprise (but not to Doug’s surprise, at all, to hear his side of this tale) we fell in love.  He proposed in February of our senior year and we were married in July.

 

We were excited to start our family and although we tried to conceive for several years, we were unable to have children naturally.  After much discussion and prayer, we decided to adopt.

 

We investigated and communicated with several adoption agencies, only to realize that to a young couple working in the ministry, private adoption through an agency was far too expensive for us to pursue.  We briefly considered a private open adoption, only to have it fail.  It was heart breaking, and we decided that we would enjoy our child-free family as best we could, and we did not pursue adoption any further.

 

Through a series of circumstances, Doug and I made a temporary move into a home with seven children.  The parents were divorced and the mom was facing serious surgery in another state.  With the blessings of the grandparents and our pastor, we moved in.  After that month of caring for the children, Doug and I realized we were not content with our child-free existence any longer, and we decided to pursue adoption through our state.

 

We attended the requisite classes with our county’s Department of Children and Family, graduated with our certificate, passed our home study and waited for a call about a child who needed a home.

 

That phone call came in August of 2001.  They told us about a little boy, named “Nicholas”, 15 months old, who would soon be free for adoption.  They told us that he had a few medical issues and was slightly developmentally delayed.  We communicated with his foster parents who were sweet Christian grandparents; and we visited with him for the first time in September.

 

Honestly, his foster mom had sent me pictures of him, and I totally believed that when I saw him in those pictures that I would be overwhelmed with love for this little boy.  I was not.  In fact, I spent much time in tears and prayer wondering if I could love this little baby with the funny shaped head.  I just wasn’t sure.

 

However when we walked into the house and saw Isaac for the first time, it was truly “love at first sight.”  In fact, as we drove home, we were giddy with the emotion of it all.  Our hearts had been knitted to him in that one visit.  His foster parents later told us that they also knew after that visit that we were the ones to be his parents.  They said he always cried when other people held him; but we both held him for long periods of time during that first visit and he was very happy with us.

 

In the next several weeks, we were allowed to read Nicholas’ file with the county, as well as travel with him to doctor’s visits.  He also faced major surgery in October of 2001, and we were able to be with him and his foster parents for that.  His foster mom later told me that she thought if we were able to be “scared off” from adopting Nicholas, it would be during the time of his surgery and recovery.

 

It was a bit overwhelming for us, but we were already in love with this little boy and there was no way we could abandon him now.

 

Finally in February, his birth parents’ rights were terminated by the courts, and he was free to be adopted.  The courts ruled on Tuesday, and we brought him home to live with us on Friday.  It was a wonderful day!

 

We had a few months of transition time.  His foster parents kept in close contact with us during this time.  It was almost “too” close, as far as we were concerned.  It was very overwhelming to be first time parents, and there was even more pressure as we were followed so closely by the state, county and former foster parents.  We realized, though, how important that was for Nicholas’ safety, just in case his care was going to be more than we could handle.

 

All went well, though, and in May, just three days after his second birthday, our adoption was finalized at the county courthouse.  My parents, as well as Nicholas’ foster parents, were able to be there that day.  It was an incredible day.

 

At his adoption, the judge asked us what we would be naming our new son.  We responded that we would be retaining as his middle name “Nicholas”, because it means “victorious people”.  We felt that with all the medical challenges facing him, he needed to be reminded that he was victorious. 

 

For his first name, we gave him the name “Isaac”, which means “laughter”.  After nearly fourteen years of marriage, God had blessed our union with a son!  We felt a little like Abraham and Sarah who waited so long for the child God had promised them. 

 

Our happy little baby boy Isaac was indeed our “son of promise”! 

 

 

*********************************************************************

 

Isaac’s Medical Information

 

I promised, a few weeks ago, a post on Isaac’s medical conditions.  I’m going to try to be succinct and brief!

(Notice, I did say “try.”  )

Please note, too, and this post is not being written to evoke sympathy from my readers.  This information is a written list or testimony, if you please, of God’s goodness and mercy. 

It’s also a testimony to the miracle that is Isaac!

Isaac was born at 31 weeks.  He weighed 2 pounds 14 ounces.  He had various problems right away.

  • he suffered a Grade III-IV brain bleed immediately before, during or after his birth.  (in an adult, this would be called a “stroke”.)
  • he was positive for opiates and cocaine.
  • he had hydrocephalus (water on the brain)
  • he had a heart murmur.
  • he had hypotension (low heart rate)
  • he had kidney failure.
  • he went into respiratory distress.
  • he began having seizures.
  • he was diagnoses failure to thrive

He was transported to a local children’s hospital where they inserted a shunt in his brain for the hydrocephalus and put in a feeding tube.

Over the years he has added additional diagnoses:

  • cerebral palsy
  • feeding disorder
  • oral aversions
  • asthma
  • crainiosynostosis
  • strabismus
  • exotropia
  • optic atrophy
  • nystagmus
  • ankyloglossia
  • global developmental delays
  • gastroesophageal reflux
  • delayed gastric emptying
  • intractable epilepsy

Since birth, he has had 12 other surgeries.

He takes meds for seizures and a sleep aid.  He takes various supplements to aid his digestion.

He did wear glasses, but then we taught him to use his hands!  He seems to see well enough to know who is around him and he certainly looks at the t.v., so we are foregoing glasses at this time.

The other issues that he had at birth either resolved themselves, or we are checked on a twice-yearly or yearly basis.  For instance, they do an ultrasound once a year to check on his kidneys.  We see the gastro doctor every 6 months, unless we have troubles. 

We also have CAT scans or MRIs to check his shunt every year.  If we have any symptoms of shunt failure, we have those tests run more often.  He has needed his shunt revised three times.

Isaac is still fed via a g-tube, although for many years he did not need one.  He was learning how to chew and talk a bit before his seizures became so severe that he lost those abilities.

Isaac had his first grand mal seizure (since shortly after birth) at age 5, and we have been attempting to get control of them ever since.  For several years he had multiple petit mal seizures every hour.  Truly, I would lose count when I tried to keep up with them just to count them. 

For the past several months, his seizures have been slowing down, and we see only a few rare staring seizures each day.  This is the first time in years that he is getting some relief from them.  We are SO thrilled to see these changes.

We often say that if it weren’t for the seizures, Isaac would be brilliant.  We are excited to see how he progresses during this time of fewer seizures.

For now, Isaac does not sit, stand or walk.  He is wheelchair bound and is completely dependent on his caregivers for all of his daily needs.  We do have any help with Isaac at this time.

As long as Isaac’s heart, lungs and kidneys are healthy he will be doing well.  If he begins to have trouble clearing his airways, we will learn new techniques and equipment to deal with that.  Our main enemy is pneumonia, of course.  We work hard to keep those lungs clear!

~~~~~~~

After listing all of that, I just was to say,

“Bleh!”

None of it matters.

It is just the lingo that you learn when Isaac comes into your life. 

It doesn’t define who he is!

He is a typical 14-year-old.  He loves nothing better than LOUD noises!!!  Especially when he is in a big store with his Dad (because they echo, you know!).

He loves music SO much.  And Veggie Tales.  And Barney.  And Maisy.  And sometimes Elmo.  (He has to be in a mood for Elmo.) And Little Bear.  And much to my dismay, Disney movies! 😉

He adores stringed instruments, particularly the banjo.

He has a wicked sense of humor, and can get tickled at the oddest times.

He used to love to sing REALLY LOUD, but since his voice has changed, he doesn’t seem to like the sound of his own voice.  We are encouraging him to sing more, as we really miss hearing him.

He recognizes “Jingle Bells” and “Happy Birthday” as being really fun songs.

He loves the songs “Oh, How I Love Jesus”, the “B-I-B-L-E” and “Namaan.”

He loves mashed potatoes and chicken and birthday cake (well…really CAKE of any kind makes him very happy!)

He likes to look at books and to be read to.  He is learning to push buttons and to make choices by touching items with his hands.

He loves his Grammy and Papa, and expects to be the center of attention when they are in the room.  He likes “parties”, especially at Aunt Brenda’s house. 

He enjoys attending junior church on Sundays and sits with Ms. Robyn.  She has a wonderful ministry with Isaac, and is introducing the other boys and girls to him each week.  It has been an incredible blessing to be able to sit with my husband in church again, after many, many years of sitting alone.

He loves to be touched, and to touch others, just don’t rub his head, please.  His favorite hug is a head-butt – the harder the impact the better!

This child of mine is just that – a child. 

He is not guaranteed tomorrow – and neither am I.

Neither are you.

He is with us for as long as God deems it best.  And if I have my way, that will be until the trump of God sounds and we are all caught up together with Him in the clouds!  (I Thessalonians 4:17)

Then we can all enjoy the last part of that verse together…

“…and so shall we ever be with the Lord.”

Won’t that be a glorious day?!!

//
//

Such a Nice Weekend

We had a really great weekend here in sizzling hot Florida.  Even the weather took a little break and was not in the high 90's the entire time.  We had a few showers that cooled things off a little bit, too.

On Saturday we decided to go on an adventure.  For us, you know, sometimes an "adventure" means that all three of us are in the truck and we're not going to a doctor's appointment!  So for us to go out of town – and not to a doctor – was an especially adventuresome day.

We took a trip to a grocery store:  Whole Foods Market in Orlando.

We didn't even know about this chain of stores, nor that we had one close by.  So when my brother, Michael, told us about it, we were eager to check it out.  (and praise the Lord for his other recommendation of "don't forget to take a cooler!")

It was one of the best shopping experiences we've ever had.  The employees in the store were extraordinarily helpful and polite. (Unlike the man at the mall last Saturday who asked me NOT to stand in front of his kiosk with Isaac if I wasn't buying anything because I was blocking his display!  And he did not have one customer at the entire enclosure!  So rude!) 

It was Saturday, so of course, the store was very busy; but even the other shoppers were polite and kind and smiled at my child.  Doug commented on it as we were living – that it was one of the nicest shopping trips for Isaac in a long time.  No one stared, or commented…maybe it was just because we were in a bigger city.  I don't know, but we had a nice time there.

Of course, everything was extremely expensive.  I'm going to be checking out their website today to see if they have online coupons or a magazine or newsletter, something that might have the occasional coupon.  If you know of anything, please let me know.

(The first thing I did see on the website this morning, as I grabbed the link for you, was a recipe.  And just look what recipe it was!!!  So funny, considering last week's mix-up!)

We found lots of yummy foods to try.  It was especially nice to have choices in the frozen food sections.  It is good for us to have a few convenience foods in our freezer all the time, and while we can find organic, healthy things at our local grocery store, our choices are very limited.  There's only one frozen organic vegan soup that doesn't contain soy (which I try to avoid); and only one cheeseless vegetarian pizza on a whole wheat crust.  It was really exciting to have so many choices and be able to try a few new dishes.

The produce was lovely and they had a nice selection.  The prices there weren't too bad, about the same as our local store.  If we were presently eating meat or seafood, they had many, many choices, including an octopus salad that was so gross looking I couldn't even stand to take a picture of it!  <<<shiver…>>>

There was a huge deli and pizza bar, along with a massive cold and hot food bar.  There were still lots of things that we really shouldn't eat for our diet, but it was nice to just look and smell.

On Sunday, we were both able to go to church, which is always a blessing.  We also worked really hard all weekend on laundry.  I feel like we made a respectable dent in it! : )

Well, it's lovely to be starting a new week.  I pray that you have a productive and peaceful Monday!

Blessings,
Alesha

Of Avocados and Mangos

I had no idea that I liked mango until I tasted a fresh one!  Wow!  What a difference between that and the mushy stuff you find in the average fruit cup.

I didn't set out to try a new fruit, though.  It all happened like this…

You see, I asked my hubby to pick up an avocado while he was at the grocery store.  I was planning guacamole.

01avocado

This is what he brought home:

01mango

Yep…you can go ahead and laugh.  I certainly did!!!

Well, at least he brought home something very tasty!  And it's those kinds of mistakes that turn into blessings.

Yummmmm…mango!!!

: )
Alesha

It’s Been One of Those Days

Did you ever have one of those days when…

…you sit up in bed and as the ache hits your pain receptors, you think "This is not going to be a good day!"?

…you text your hubby at work, only to hear a message "ding" from across the room?

…the a/c that is limping along decides to just lay down and die?

…you decide not to call your a/c repairman (Dad) because he just has so much to do today?

…you go to feed your child, only to discover that he is wet – diaper, shirt, pad, sheet and mem*ry foam mattress?

…you grab the lift to roll it across the room, and it gets tangled in a writhing mess of extension chords, belts and ties?

…the lift pulls the lamp off the dresser, exploding the light bulb?

…the lamp shades breaks into three separate pieces?

…you have all the makings of a "migraine" headache?

…your church friend emails to say that her mother has only a little while longer to live?

…you think to yourself "This has not been a very good day, but compared to some other people's day, I have absolutely nothing to complain about!"?

THEN did you ever have one of those days when…

…your a/c repair man just happens to pop in at his house at 9:30, and will be over in just a minute to check the a/c?

…you walk into the living room to tell him what the problem is with the a/c, only to hear him say, "It's running!!!"

…you put your hand in front of the vents and feel luscious, icy, cold air blowing?

…your mom says "Let's place an order at Bath and Body Works(!!!)?

…your son is so delighted with himself that every time you speak to him, he smiles and "talks" back?

…you have the fresh ingredients on hand to make a strawberry-banana-cherry smoothie for your and hubby's lunch?

…the migraine medicine actually works and you're able to get a load of laundry washed and dried?

…your a/c repairman comes over to install an exhaust fan and an air vent on your back porch, so the wood won't melt every time you run the dryer?

…at the hottest part of the day, the a/c is still running?

…you sit down to count your blessings and realize that even on the worst of days, you have so very much to be thankful for?

Yep!  It's just been one of those day!

Blessings,
Alesha

A Movie Day for Me

I had a free day today, with Doug and Isaac going to therapy.  So I decided that, in between a little housework, I would treat myself to a movie day.

I thoroughly enjoyed "Wives and Daughters".  It was quite lengthy, but I forced myself to watch the whole thing! : )

0001

I wanted to thank everyone who took the time to comment yesterday.  I certainly appreciate it.  I did have a friend bring up a very valid question:

How can I subscribe to your blog by email?

I was able to answer that by adding a little box over there in the first column on the right.    It says "Get Email Updates."

You just enter your email, click the button, and then confirm by clicking a link in the first email message they send you.  Then every time I post something on my blog, you will receive an email.

Thanks, Kathy! : )

Well, I guess that's it for today.  I still feel a little "stiff" here in my new blog…isn't that funny?  I guess I need to get use to the "compose" box and I will feel more at home.

Blessings,
Alesha