Category: Isaac Update

Just a Hello

by ObtainingMercy, posted in Isaac Update, Prayer Request

I don't really have much of interest to say today, but I felt the need to just pop in and say "hello."  We are all doing fine, and I am feeling a little more hopeful about the whole "surgeries" scenario.  Thank you for your kind words of encouragement and for your prayers for us.

I was able to enjoy some quiet time on Saturday.  Doug took Isaac with him for a couple of errands and I was able to bask in that beautiful quiet that is my house with no other people in it and no television, radio, music, or movies making noise in the background.  My a/c window unit drowned out all the noise from the outside and I rested my ears and my brain for a while.

I was also able to concentrate long enough in one sitting to put up some new jewelry items on Etsy.  I love the whole jewelry making and selling process, but the pricing and listing is definitely not my favorite part.  However, when you put up new items, it does definitely increase your web site traffic for a few hours, and that is always good and hopefully will eventually result in more sells.

Last night, at church, I was able to join the choir.  We have found a small room at church where Isaac can make as much noise as he wants to, and it won't bother anybody. ; )  So Doug is sitting with him there, so that I can be involved with the choir.  I enjoyed it so much, and I am so grateful to my good, sweet, thoughtful husband who saw that I had a need, and figured out a way to meet that need.  I am so blessed!

Isaac is running a low-grade fever again today.  We'll be making an appointment soon to see the orthopedist about his hip.  He is really antsy and unsettled today, so I'm wondering if he is having some pain.  : (  I did give him some M*trin, just in case.

Well, I guess that's it for today.  I will keep you posted! : )

OH, and one more thing I wanted to share with you: 

Our church will be taking up a special offering this next Sunday for some things that need to be upgraded in our ministry.  We will be

  • refurbishing some of the dorms at our college,
  • continuing the construction of our gymnasium and
  • purchasing a radio tower that will boost our signal back to its original strength.  

(our old tower was leased, and when the lease was over, it was torn down; so now our radio station's signal is not reaching to places it was reaching before.) 

Our goal is $150,000.  If you think of us this week, would you pray for our offering?  I know that God will be glorified by the way the church uses this money.  If you would like to read more about our church and the ministries it supports, you can check out our newly refurbished web site:  Landmark Baptist Church

I guess that's it for my rambling today. : )

Blessings to you,

Alesha

Unfortunately, Surgeries are Looming…

by ObtainingMercy, posted in How Great is Our God, Isaac Update, Prayer Request, What's Happening

Yeah, I know.  I'm not really excited about it either.  We've been to 4 doctor's offices in the past 2 weeks, and we've seen 5 doctors.  

Within the last 3 weeks Isaac has started having an entirely new kind of seizure.  He has also run an intermittent low-grade fever.

We've also known for about 7 months that Isaac's hip is dislocating about 50% out of the socket in certain positions.

So two of his doctors have recommended surgery:  the neurologist and the orthopedist.  The neurologist has recommended an implant that might reduce Isaac's seizures.  The orthopedist wants to do hip surgery.

As we told the neurologist about the orthopedist's recommendations, she told us that if he is having a lot of pain in his hip, that could be causing the new seizures and the low-grade fever!  Right, so my son is in pain, and I didn't even have a clue.  I'm feeling really terrible about that right now!

So, we'll be seeing the orthopedist again soon, to have more x-rays taken, and to hear his recommendations.  This surgery is quite invasive, and would mean 6-8 weeks in a full body cast or brace.  I told Doug that we would definitely need nursing help following that surgery!

We will not likely do anything about the new seizures until after we have resolved the hip issue.  If it is pain that is causing the new seizures, then following corrective surgery, they should stop.  Normally.  Ideally.  In the usual cases.  (Yeah…I'm not holding my breath on that one!)

Needless to say, we are not feeling very happy about these situations.  We hate to see new seizures, no matter what is causing them.  We feel horrible to think that Isaac is hurting all the time.  We loathe the thought of another surgery, especially because he did so poorly during the last surgery.  We abhor the idea of more equipment and gadgets being implanted in his little body. 

I was going to include links to the two surgeries so that you could look at them, but I just got overwhelmed while reading the sites and had to stop.  When it's time to go forward with them, I'll give you a better idea of exactly what will be happening.

I know that my God is in control.  I know that God has His hand on Isaac's life and ministry.  I know that God has allowed us to walk some very difficult paths so that others would see Him in Isaac.  I believe that Isaac causes people to think about God, and reconsider what they believe about Him.  I have witnessed folks response to the peace that Isaac has, and to the peace that God has poured out on us.

Sometimes I don't like where God leads us, but I know it is for my good and for His glory.  So "I will follow, follow, all the way" just like the old hymn says.  It will be very interesting to see God work through this next stage of Isaac's life.

We certainly would appreciate your prayers for wisdom as we make the decisions for which procedures to do, especially the one on his hip.  There are innovative doctors doing wonderful things for our kiddos, but they are not covered by Isaac's insurance, nor are they in the state of Florida.  We need wisdom to choose what is best, while considering all the factors involved.

Thank you, in advance, for carrying us to God's throne in prayer.

Alesha

Update to Prayer Request

by ObtainingMercy, posted in Isaac Update, Prayer Request

Well, the doctor could not find anything wrong with him, and assumes he has something viral.  If he continues to run fever for 3 more days, then we will take him back.

BUT she could not check the shunt of course (it's in the back of his head, under the skin…here is a site explaining shunts) and so we will be going to see the neurosurgeon next week.  If by next week, the fever has stopped, then that will be a good indication that the shunt is just fine.

So thank you for praying.  His fever is still down, and he has been acting like he feels ok.  We'll check his temperature again, as the sun goes down.  That's when it tends to go back up.

This has been one of those days that all parents of special needs children will understand.  There's a problem with my child, but because he can't communicate with us, we have no idea what it is.  We visit the doctor, and they can't tell us either.  So we wait, and pray that the issue is resolved or that it makes itself known.  However, we don't want our child to become more ill.  Our only choice is to wait, but that is so difficult.

This is one of those days when that digital readout on Isaac's forehead seems like a really good idea.: )

Birthday boy with daddy

I'll keep you updated on how he is doing.

Thank you again for praying for us,
Alesha

Prayer Request

by ObtainingMercy, posted in Isaac Update, Prayer Request

Hey ya'll…we're taking Isaac to the doctor today.  He's been running fever since yesterday.  Meds do bring it down, but then it goes back up again.

There are so many things that it could be…sinus, ears, throat, g-tube, kidneys, lungs, bladder or shunt.  If it is the shunt, that is very serious.  So since he has no symptoms that I've been able to deduce, please pray for wisdom for the doctor (not our regular doctor either!) to figure out what is going on with him.

I'll be back to update you later, Lord willing.

Thanks so much,
Alesha

Quiet Middle, Then BOOM at the End!

by ObtainingMercy, posted in Holiday, Isaac Update, What's Happening

The balance of our week has been relatively quiet – which is ok by me! 

For some reason, Isaac has decided that nights are for singing and laughing and playing, while early mornings into the afternoons are for sleeping, sleeping and sleeping!  We usually don't have any idea why he occasionally gets his days and nights mixed up, and this time is no exception.  We just do our best to keep him awake during the day, and hope he will break out of the cycle before too long.

I was looking for a good guacamole recipe yesterday.  I've tried several, but I haven't been really pleased with any of them so far.  I finally "googled" "guacamole" + "authentic recipe" and on page 3, found the Pioneer Woman's recipe for guacamole and pico de gallo. 

The recipes were fabulous!!!  So simple and yummy.  I don't know why I didn't think to search her site first.  Maybe because most of her recipes sound so rich with butter, cheese and meat that it didn't dawn on me to try her site for two vegetarian dishes.  These were great though.  I heartily recommend them!

Well, Doug has the day off today, and we're trying to find something fun to do.  It has to be an inside activity, though, because the temps are supposed to be in the mid 90s today.  We're thinking of going back to the Wh*le Foods Store.  What???  Isn't going to the grocery considered "something fun to do" at your house???  : )

Isaac will be enjoying the "BOOMS!" this weekend!!!  The first July 4th after his adoption, we went with friends to the local fireworks display.  We had no idea how he was going to react, but he loved it!!!  Giggled and laughed the whole time.  We've not taken him for years due to the seizures, but he still enjoys the big noises every year.  We call them "BOOMS!" because to Isaac, that is a very funny word.  : )

Well, the boys are waking up…I guess I need to finish up.  I pray you
have an exciting and safe Fourth of July holiday.  For those of you
outside the States, go ahead and light a few sparklers on our behalf! 
You know you want to! : )

Blessings,
Alesha

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

by ObtainingMercy, posted in Isaac Update, What's Happening

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

Friday, 19 June 2009

by ObtainingMercy, posted in Florida Weather, Isaac Update

*EDIT below

If you are a fan of rip-roaring thunderstorms, you really should come to Florida during the summer. 

Yesterday's
storms were predicted for several hours before they actually got here,
so I was able to get outside in the yard to pick up a few
things…cardboard boxes that hadn't made it into the garbage can, a
piece of tubing that will eventually be part of our central a/c system,
and a watering can.

I also moved a bag of playground sand, then
later wondered if that was such a good idea.  After I came back inside,
I kept feeling twinges all over – my upper back, my hip, my lower
back.  I am happy to say, however, that as of this morning, all is
well!  Nothing seems to be any the worse for wear.  I think I am just
starting to use muscles that have been dormant for a while, and they
were protesting my use of them.  How dare they???

Hey, are you looking for a good mystery to read this summer?  Here's a review of one by my bloggy friend Cheryl at Copperswife.  I'm always excited to get a "thumbs up" on a good mystery series!

I
was happy to be able to tackle a good deal of the laundry yesterday. 
Doug has been doing most of the laundry on the weekends, except for the
week my mom was here.  It's just too much for me to sort, then carry
the clothes to the washer; and then the stretching and bending to move
it from washer to dryer was not a task I could do either.  So, it was
nice to be able to do some of it by myself yesterday.  Now, mind you, I
still have a large stack of undies and pjs sitting on the end of my
couch, but still…some of it got finished. 

Isaac
had a drowsy, slow-moving day yesterday.  I'm not sure what's going on
with him.  I'm hoping that he was just recovering from his busy day of
therapy on Wednesday.  He was certainly in a good mood, though, and we
laughed and giggled all day long.  His laughter is so contagious…I
don't even try to stop myself.  It does good like a medicine…and that
is good for both of us!

Well, I have several things on my to-do
list for today.  One of those is to make my weekly visit to the
chiropractor.  Hopefully, that will go smoothly, and I'll be back home
to finish that to-do list soon.

I pray that you have a great
weekend, and that you are able to assemble with like-minded believer's
in church on Sunday.  If you have no plans to attend, I heartily
recommend that you change those plans and be in the Lord's house if you
physically can.  Your spirit will be fed by the preaching of the Word
of God, and you will be encouraged by the fellowship with other
believers.

Blessings,
Alesha

*Edited to add:  when I returned home from the chiropractor, my mom had swept the house and folded all that laundry!!!  Whooo hooo for mamas!!