Thursday, May 27, 2010

Hope, Peace and Love.

 We have yet to know the specific 'name' of the disease that Wyatt is battling. His team of doctors suspect that it's a Mitochondrial Disease and in the paperwork that we have it states that he has "probable Mitochondrial disease". But, in reality, we don't truly know what's taking our son's body captive piece by piece. Not knowing is incredibly hard. The doctors talk about "progression" of the disease....we know this, we've seen it with our own eyes. And when I hear them talk of the progression of this disease the words are screaming in my head "BUT WHAT DISEASE?!?" They don't know.
 During the 3 weeks that Wyatt was inpatient his neurologist sent a referral letter along with his medical records to a specialty doctor that is located in Atlanta, Ga. We've been talking with the neurologist about this doctor for well over a year now and, at this point, it seems this is our next step.
 We will be traveling to Georgia and meeting with the doctor on June 16th. Wyatt will have a Resting Metabolic Rate (RMR) test a few hours prior to the consultation. On June 17th he will have a muscle biopsy along with an additional spinal tap.
 We have hope that there is a doctor that will be able to tell us what is causing our son such pain and discomfort. We understand that there may not be a cure at this time, but we have hope.
 We also have peace. We understand what "progression" means and what is happening in his body. It's scary, but we have peace.
 We know love, we feel love. What is happening is out of our control, but we have unconditional love.










*The backpack that Wyatt is wearing in most pictures carries the formula that is feeding him through the feeding tube. It is able to hang on the back of his wheelchair when he's sitting and is small and light enough for him to carry on his back when he is on the move.
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Sunday, May 23, 2010

Confirmed


Jill and Baby Mari are ready for the big event today.

We attended our nephew's confirmation at church. It's an important day! I'm not certain many of the kids who are being confirmed realize to what extent...I know I sure did not at the time (oh, the confirmation class memories!), but none the less, it's a day to celebrate.

We arrived early and had time to be silly before the more civilized other families arrived. 
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Family.
  My Brother-in-law and the newly confirmed nephew
 My Sister-in-law and the newly confirmed nephew
The fam (minus the youngest boy who was off busying himself and avoiding the pictures at all costs.)
The man (*almost*) of the hour and Nana (great-Grandmother)
Our three tiny people.
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Today was also a day of celebration of another kind. 41 years ago today my in-laws were married and bound together for a life of love and happiness. Forty-one YEARS....and they are both still smiling!
Awwww!
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Thursday, May 20, 2010

The Sunshine award

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I've been awarded my first blog award!

Kim, over at Just Sayin... awarded me with this honor. You must check out her blog...she tells all about her silly boys' antics and mischievousness. Along with their everyday family happenings. It's a good read!

Here are the following bloggers that I feel deserve this wonderful award!
(in no particular order)

Life with Jack
 
MyCup2Yours
 
It's Twinsanity
 
Sneak Peek At Me
 
Surviving Little People
 
The Tater Twins
 
The Roeh Rundown
 
onelovemama
 
Memoirs of a Southern-Yankee Girl
 
Maxwell Designs Blog
 
Life with the Ferrells
 
Sprout Reviews
 
If you receive this award these are the rules:
You must pass this on to 12 other bloggers you think are fantastic! You must also link back to the person who gave it to you. This is also a great way to find new blogs to follow!
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Wednesday, May 19, 2010

Mr. Fix-it and the list of to-do's.

While we were away at the hospital something, or someone, created a hole in the bottom portion of our fence that borders one side of our yard. The fence was old, warped and only a matter of time before it started to crumble...but it did it's job. We decided to put it out of it's misery and gently disassemble it.

The kids are excited to take on the family job of walking the dogs in the backyard. How long do you think we have before the novelty wears off?


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Friday also consisted of re-planning the flower beds in the back yard. Now that the fence was down, the layout of things was not ideal.

Bryan was so excited...you could see it in his eyes.

After explaining what exactly I was envisioning, Bryan took the necessary measurements and carried out his complicated mathematics. And by the end of the weekend I had the raised flower beds that I was picturing in my head.

He's so great...my Mr. Fix-it.

 

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When we came home from the hospital last week I thought maybe our downstairs bathroom floor was sagging a bit more than usual. But I then talked myself out of it and figured it just felt different because we were used to the ultra hard/concrete-ish hospital floors...not our ageing homes', creaky, wood flooring.

Throughout the week we noticed a small puddle of water on our bathroom floor at random times. At first we blamed it on the kids playing in the sink or the dogs drinking from the toilet when the seat was left raised...it's not unusual in this house with several sloppy kids and 2 messy dogs. But as the weekend progressed we noticed the puddles more often. And by Sunday evening we figured out the toilet was leaking.

Great.

Monday evening Bryan was able to stop the leaking, but we needed to get to the bottom of the sagging floor and fix it before one of us went crashing through it.

Ok, maybe it wasn't that bad, but that's what I could picture happening....that's just how our luck rolls, it seems.

Now we have a bathroom that is "out of order" until the flooring job is complete. At the moment the floor has been torn up and the plan is to replace what we can, when we can.

Add in dealing with our HHC (Home Healthcare Company), which supplies (or is supposed to!) Wyatt's medical supplies and we're just having loads of fun here!

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We did receive some good news recently, as well as, some hopeful, promising steps forward. I don't feel I can share just yet, until we are sure of them both, but I will as soon as things are confirmed.

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This was our past week in a nutshell. How was yours?
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Thursday, May 13, 2010

Getting used to the new normal...


Our week has been packed. A lot of phone calls setting up new medical supply deliveries, scheduling follow-up appointments and just getting used to the new care routine for Wyatt.

Wyatt was discharged from the hospital on a new formula, being fed continously 24 hours a day into the J-tube, new medications/med schedule and draining the G-tube as needed and while sleeping. He's unable to tolerate solid foods, beyond "clears", in his stomach. So, he's been eating popsicles here and there, and today he has been sucking on a lollipop that we decided to try for a flavor/texture variety.

One day at a time.

We had a follow-up appointment with the pediatrician today and within our discussion it was reccomended that Wyatt finish out the school year on homebound instruction. He's received homebound tutoring part time throughout the year due to the modified weekly schedule that is in place for him. So, the services are already in place and it's not that big of an adjustment for any of the parties involved. We do hope to have him pop in to his class for the end of year parties and social fun that comes with the end of a school year. I'm a bit sad that he isn't able to fully finish out his 1st grade school year with his friends, though.

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This week, in amongst the seemingly continous phone calls to medical suppliers and doctors offices, we were able to take a time-out to visit my Mother's home...where she has a litter of 5 Angora bunnies.

Oh.
My.
 
 Gosh.
 
 Cuteness abounds.

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Monday, May 10, 2010

He's home!

Tonight we are all under one roof....a very happy evening for us!

I'm leaving the update until tomorrow.

We're relaxing together tonight.
And slowly unpacking.
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Tuesday, May 4, 2010

These are the days of our lives....

Our weekend was slow going, but we had groups of visitors come Sunday afternoon and evening, which was very nice.Wyatt was clearly happy to see familiar faces to laugh and play with.

On Saturday one of the multiple tests that they ran did return with a positive result for the Adenovirus. The only issue is that Wyatt's not "sick, sick"....no temperature, no runny/stuffy nose, no cough, no aches and pains other than from his GI tract, etc. So, after consulting with all the doctors it appears we found something, however what we found seems to not be related to what's keeping us here.

BUT, hospital policy has placed us in isolation due to this finding. Which means no Child Life play room, no walking the halls, door closed at all times and everyone has to wear a not so flattering sunshine yellow gown, gloves, which are a lovely shade of gray, and a face covering mask to come see us. Not very fun....for anyone!

Yesterday Wyatt went to the OR to have an Endoscopy with biopsies taken of his upper GI tract. He did great and he looks good on the inside. No obvious allergy signs, ulcers or anything of the sort was seen. Which is good...although, it was clear that everyone was hoping to find something that was easily fixable.

Today, he'll be having a GJ tube placed. A G-tube, which he has now, feeds him in his stomach. A G-J tube bypasses the stomach and will feed him in the jejunum part of his intestines. The hope is that this will lessen his severe reflux and reduce some of his pain and discomfort. If it works as we all hope and he is able to tolerate full feedings then we'll be on the (hopefully fast) track home!

::crossing my fingers::
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Saturday, May 1, 2010

In the hospital...

Wyatt was re-admitted to the hospital on April, 21st due to an Ileus, which is a medical-ified way of saying that his GI tract slowed way down and stopped working. There was something that was noted on x-ray that was originally thought to be the cause, but then dismissed after an abdominal ultrasound.

It's been a worrisome, sometimes frustrating, informative and confusing 11 days.

We're all really missing Maggie and Jilly, our home, the pets and our own BEDS!

Bryan's employer has been wonderful with allowing him to be here with us.

Wyatt was put on gut rest initially and we then, very slowly, started to re-introduce formula through his g-tube. After a lot of starting and stopping the feeds due to his pain and discomfort, it was decided to start trialing different types of formula. Over the course of a week we trialed 4 different kinds until we found one that caused the least amount of discomfort for him...Elecare, an amino acid based, hypo-allergenic formula. During the time we have been here we've also added several new GI medications to the mix along with a few other added issues being noted in his, ever growing, chart.

Where we're at now....we were able to wean him up slowly to full strength Elecare running at 35ml/hour. 30-35ml/hour seems to be his comfort limit...the ultimate goal is 65ml/hour. There has been a lot of talk about food allergies, endoscopy/colonoscopy, G-J tube trial, etc...but that's all on hold for the weekend.

He's been unhooked from feeds since early yesterday morning when he had an upper GI test that ended up being very uncomfortable for him. And afterward it was decided that he needed a, as pain free as possible, break from things. They will be restarting the feedings again sometime today.

We're currently waiting to talk to the doctor that's here for the weekend shift....he did tell us early this morning that he has a few tricks up his sleeve.
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