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

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

ENERGY!!!

Today, for the first time in over 2 months, I woke up with a bit of energy!

I
was able to work in the kitchen, only stopping to feed Isaac and take
out the dog, for about an hour and a half this morning.  I have not
been able to do that in such a long time!  Praise the Lord!

I
am still in considerable pain.  My chiro explained that it is nerve
pain I am feeling, from disks in my back that are inflamed, pinched or
damaged.  We're not sure which, but are not going to spend a lot of
money finding out right now.  The best thing for my back right now is
periodic adjustments, continued weight loss, an optimal diet and
moderate exercise.  For now, my exercise is working in my house,
something I haven't been able to do for a while.

We are
continuing on our Hallelujah Diet, although it has not been easy the
past several weeks.  We are juicing our carrots and taking our barley
and all of our daily supplements.  They really do help us to feel so
much better when we do that every day.

Here's a little something I thought you would enjoy:


(they sell these on the Hallelujah Acres website, and I just could not resist!)

I also have a fabulous recipe to share with you.  It was sooooo yummy!!!  The recipe is found in Recipes for Life from God's Garden by Rhonda J. Malkmus.

Stuffed Red Peppers
4            medium red bell peppers
1/4 c      onion
1 c         celery
1 c         corn kernels (I used organic canned corn, but fresh would be better)
1/2 tsp   rosemary
2 c         vegetable soup stock (I use "Vegetarian Better Than Bouillon" in water)
1/4 c      chives (I used dry, about 1/8 c)
1/4 c      carrots
1 c         basmati rice (I used brown basmati rice)
1 clove   garlic
1 tsp       parsley flakes (I used about 3 stalks of fresh)
Celtic Sea Salt to taste

Bring
soup stock to a boil, add basmati rice, reduce heat, cover and cook for
25 minutes.  Turn off heat and allow to sit an additional 15-20 minutes.
Slice
tops off peppers, remove seeds and stems, and dice the remaining red
part of the top of pepper.  Dice the onion, celery, chives and carrots
and combine with diced red pepper and corn.  Mince garlic and *steam
saute this vegetable mixture until  tender – about 5 minutes.
Preheat oven to 350 degrees.  Combine rice, vegetables and seasonings.  Fill peppers and bake about 30 minutes.
*To steam saute, place veggies in very small amount of water and cook in skillet on stove top with the lid on.

Let me know if you try these, and how you liked them.  We enjoyed them a lot!

Our
church's Junior Camp is taking place this week.  We have an awesome
place, called Camp Glory, out in the middle of the Florida woods where
our camps take place every summer.  I attended them from the time I was
around 8 years old until the summer I graduated from college.  I have
wonderful memories of fantastic adventures, awesome friends and
decisions made for the Lord. 

My brother and sister in law
will be out there this week, along with many other counselors, campers,
cooks, speakers and parents.  I am praying that God will speak to many
hearts and change many lives this week. 

I am also praying the Florida mosquitos will be kept at bay and the temperatures will not be tooo scalding.  Oh, and I told my brother I would also pray that he would have a cabin full of boys who sleep all night long!!!

I pray you have a wonderful week,
Alesha

Just Hanging Out…

…enjoying Isaac's company today.  Daddy is still coming by to feed him each day.  I am still having some pain.

…counting my blessings.  We are well and together and so blessed.

…praying
for friends:  those who are ill, those who are grieving, those who are
trying to sell a house, those who are recovering from surgery, and
those who have hearts broken beyond belief.

…remembering
yesterday's blessing of being able to assemble with like-minded
believers in church.  Never take a service for granted!

…enjoying the beautiful BRIGHT sunshine outside; and knowing that like my friend Mrs. C said, by the time you read this, it could very well be pouring rain!  That's a summer day in Florida for you!

…looking forward to my doctor's visit tomorrow, and hoping that the scales will be kind. 

…believing
that the day is not far away when we will all be "hanging out" together
in Heaven, and looking forward, with great anticipation, to that day.

Alesha

Getting Better…

Isaac and I had a quiet day together yesterday.  It was my first day
alone with him, and the Lord was merciful – Isaac had a sleepy day. 
That means he was a little bit easier to care for because I didn't have
to readjust him quite as many times during the day, as I would have if
he had been full of vim and vigor!

I still have quite a bit of
pain while changing him, but it is tolerable.  I am sitting in a chair
to do his changes, and I lower his hospital bed down to the right
level.  We are so thankful for that bed!

I am also able to do
some stretches now with my leg, and that seems to be helping with the
pain when I stand and walk.  The chiro started working on my neck this
week.  My spine is in deplorable condition, unfortunately.  However, as
I continue to lose weight and visit the chiro each week, I am confident
that I will eventually have a healthy back to go with my healthy body. 
I didn't get in this shape (or lack thereof) overnight, and it will
take some time to reverse it.  I am trying to not be discouraged with
our new eating plan, and just keep going forward with it.

I just
wanted to say again, "Thank You!" for your prayers and for your sweet
words of encouragement.  They have meant so much to me, and have helped
to carry me through the past seven weeks – particularly the past two
weeks.  Thank you from the bottom of my heart!

I pray you all
have a wonderful, fun-filled weekend, and that you and I will be able
to be in the Lord's House on Sunday to worship Him together,
Alesha

This
is a little succulent in the same flower pot with my gardenia. It
decided to bloom today right outside Isaac's window.  So pretty!

Finally…An Update

Hmmm…I have a few minutes this morning to give ya'll an update on things here at the hacienda.

Isaac
is doing fine, although his seizures have been on an upswing last week
and this week.  We had that one week of relatively few seizures and it
was wonderful.  That has been followed by our seeing an increase in
them.  We are planning to have blood work done next week.  Perhaps that
will give us a clue to the extra activity we've been seeing.

Doug
is doing well.  He goes in to work really early and stays really late;
and 2-3 times a day comes home to feed Isaac and change him if he needs
it.  I don't know how he gets everything done at work; but I am so
grateful and amazed and overwhelmed by the kindnesses that have been
shown him there.  Not one of his bosses has questioned his time or
schedule, and none have fussed about his time spent here.  That is to
be appreciated at any time, but most especially during our current
economy. 

Believe me, I am so thankful!

I am doing…as well as can be expected, I guess.  I don't want to say "fine".  That's so
not true.  But I don't want to bore you with what my level of pain is
for each day either.  I was able to go 2 days without taking the
prescription pain meds.  I just took OTC stuff. 

Yesterday I stayed alone with Isaac for a few hours, and changed 2 diapers (and they were not
the easy ones, either!).  I walked more yesterday, too, than I have for
a while.  So last night I tossed and turned most of the night, trying
to find a comfortable position that didn't hurt, but not able to wake
up enough to realize I needed to take some medicine. 

Finally,
shortly after 6 a.m., I was able to wake up enough to take some pain
meds and that helped quite a bit.  I didn't go back to bed, though.  I
want to be good and tired for tonight, so that I will sleep more
soundly. 

I guess I am going to have to carefully gauge my
activity for the day, then decided whether or not to take the
medication.  As much as I want to be off of it permanently, I cannot
heal properly with improper sleep.  I end up defeating my purpose.  I
will be paying better attention to that at night when I head to bed.

Yesterday I received a sweet card from a sweet friend:

It
just made my day to know that she was thinking of me, praying for me,
and then took the time to send me a card to let me know.  Thank you, my "west coast friend"!!!

Nearly
every day I have received emails, messages, or e-cards from kind,
praying friends.  I appreciate that so much.  Some of my friends have
even forwarded my prayer request to other friends or prayer lists.  I
was really touched to have one of my friends' friends send me an email
of her prayer for my family.  Such kindness from strangers truly
touches my heart, too.

The sweetest thing, though, has been
having my mom here.  She has swept; mopped; washed and folded laundry;
washed and put away dishes; changed Isaac's videos and diapers, pad and
sheets; cleaned the bathroom; cleaned ceiling fans; took the dog out;
emptied trash cans; peeled carrots; and shook out rugs.

Not that she had
to do those things!  She could've just sat and visited with me until
Isaac needed her; but she likes to be busy, and doesn't care to sit for
very long.  Every day she tried to leave the house spotless and in
order for Doug, so that when he came in, he only had to fix us supper
and care for Isaac.  She accomplished her goal every day, let me assure you!

It
has not been easy to be in need.  It goes against my very nature.  I
like to be a need-meeter.  That's just the way God made me.  So this
has been a learning time for me.  And a humbling time. 

I just
pray that I can get better, continue to lose weight, and be able to
minister to my parents, especially to my mom, the way that she has done
for me the past 2 weeks.  My two main motivations for become healthy
are to be able to care for Isaac as he grows, and to be able to care
for those in my family who need me now, or will need me in the future. 
God willing, Doug and I will continue on our path to health!

Thanks
for dropping by and taking the time to read this post.  I think I have
lost many readers during this season of not having much to say.  
However, it is usually not a bad thing to go through a quiet season
with few words.  You usually end up hearing so much more than when you
have so many of your own words to speak.

May God continue to mold us all to His image,
Alesha

Thursday, 28 May 2009

I was so blessed to have my sweet friend come to help me out in my
house today.  The cleaning and cooking and straightening and folding
and organizing and driving me to my appointment was much appreciated! 

The conversation and fellowship, however, was even more appreciated.  How precious it is to have a kindred spirit!

I
am still in a great deal of pain.  I slept last night sitting straight
up in a high-backed, winged-back chair.  My feet and legs were not very
happy about that, but the excruciating pain in my thigh, pelvis and
back was kept at bay, and that's what was most important. 

Tonight,
I am back in the chair again, having tried without success to find a
pain-free position in the bed.  It's like a bad toothache that just
won't ease up!

I
thought, due to the fibromyalgia, that I knew how to deal with living
with pain.  I think I was wrong.  I think I only had a tiny little clue
about what it's like to live with serious, chronic, ongoing pain.  I am
sorry for thinking I was an expert.  And I am more than a little bit
sorry to now be learning that concept! 

I am hopeful, though,
that the chiropractic adjustments are going to help.  (I did tell the
doctor today that he was fortunate that I was not given to foul
language, because I would have had quite a few things to tell him today
as he was adjusting my back!)

Doug
said that Isaac had a wonderful day today at therapy.  He always sends
me pictures from his phone when I can't go with them.  As soon as I
figure out how to get those pics off my phone and onto the computer, I
will share them with you.

Well, only a little over 4 more hours until daylight…counting down the hours until I can take more pain meds.

Alesha