Thursday, December 30, 2010

We're home...nearly settled!

Finally. Henry slept. He woke only once. The last week has been very difficult for him. He seems to be settled, now. He's becoming accustomed to his G-tube. He is still struggling a little, but is managing.
His feeding schedule is hard for me to get used to. He is free from the pump for only 6 hours a day. It's hard to be patient. It's difficult to be diligent, and consistent. I feel like I'm always twenty minutes late getting his next bolus ready, or getting his medications. But, we're getting it. It's tough. Tougher than I could have guessed...

Thursday, December 23, 2010

It's dark and there are weird whiiiring sounds.

It's been a long day. Up at 4am to make sure everything got in the car, and I still had to turn around and go back... I forgot my purse!
The hospital is beautiful. It's easy to park at 6am. We found the parking structure that is connected directly to the surgery check in... Same floor, and we parked less than 50ft from the door... It was cold and windy when we hauled all four kids into the brightly lit lobby.
We received a repeat of the instructions, got Henry's patient number and went around the corner for a seat.
We only waited a few minutes before they called Henry back for Pre-op prep. He needed an X-ray. They brought the machine up to his room. It was quick and relatively painless. I have been around these hospital rooms enough, now, that I know how to ask for useful information. I used to ask questions, and get almost what I needed. Now, I can say exactly what I need to, to garner the right info.
Click to enlarge- The quilters love what they do!

Henry got a beautiful quilt from the quilting ladies that build crib sized comforters for kids that have to be in the hospital. It's unusual, but looks almost vintage. I love it!
I dressed him in little kidlet scrubs, and brushed back the hair that isn't there after yesterdays hair cut. I hate his hair... but it's best for him. After seeing one, two, three, four nurses, and two doctors - rotaing the -two-at-a-time- with Anastasia, Zane, Grandma, and Noah - I put on some paper scrubs, cap, and shoe covers. I walked with him, into the operating room. Everything is sterile. I was terrified to move... God, what if I contaminated something!
We laid him on the smallest operating table that I have ever seen... on a warming blanket. We covered his little nose and mouth with a strawberry scented mask, and he cried... cried... and went to sleep. I was ushered out, and escorted back to the standard waiting area. A beautiful area, with a fire place, and view of the mountains, and the gardens below.
A nice place to wait. If you have to wait for three hours. Three hours. Dr. Wadie started the surgery at 7:33 and by 10:15 we were being notified that he was closing, and would be out to check in with us.
"Everything went well." He gave us a short list of 'need to's and will do's' over the next three days.
No food - nothing. His stomach and bowels are to rest for 24hrs. Then slow drip, then bolus feedings, then training on the tube, and Henry's discharged!
Things to be concerned about... the nissen fundiplication coming undone. The G-tube coming lose or rejecting.
For now Henry is resting... Morphine calms him, but he won't sleep but for a few minutes at a time. His mouth is dry. He has three teeth trying to pop through. His belly is tender. He hooked up to a blood pressure cuff, a pulse/oxygen monitor, and IV and two little sticky probie things that I'm not sure about.
Drain tip... a reversing of the gtube.
He has a drain, from his g-tube, to collect anything in his stomach.
Antibiotics, so there's no infection!
He's had antibiotics through his IV, and they give him pain meds the same way.

His breathing is heavy right now. I should put this lap top in it's case, and try to sleep.

Wednesday, December 22, 2010

Tracking Henry's Progress!


This time tomorrow, Henry will be in surgery. I'm a little stressed out. Getting ready for Christmas has been shortened by two days, and then has become getting ready for the hospital. While being in the hospital for Henry will probably not be terrible, the rest of us will be traveling back and forth, and sleeping in the bed in his room.
We'll not be able to sleep together for Christmas Eve, but we'll spend the day's together.

We have a ton of snowflakes to decorate with! Thanks Lisa and Mary! Thanks Grandma! Thanks Aunt Deb! And we have a wonderful paper chain too!

So, tomorrow we check in at Riverbend at 6am tomorrow. Surgery will probably start at 7:20. You can keep track of Henry's progress with this Smartrak website. We won't know his number until we check in, but his Dr.s Name is Wadie. You can track him with that. OR check our Facebook status.



Until we return, Merry Christmas!
God bless EVERYONE!

Wednesday, December 15, 2010

Henry's Braces.

Henry is being fitted for leg braces today. Why would a boy that uses a whellchair need braces, you ask? Well, there are several reasons.
First, braces will help shape his leg bones. His muscle tone is too strong, and pulls the bone in an unnatural direction where the bones are the thinest and weakest. His ankles could be completely misshapen if not for the use of these braces.
Second, it trains his muscles to pull differently. His muscles are very strong from being in a tight pattern all the time. The braces along with stretching and physical therapy, will help disrupt that pattern.
Third, if these first two things are unsuccessful at changing the patterns and his bones turn to an unnatural position, surgery may be required later. So, doing everything that we can to prevent having his muscles cut, and his bones altered with screws is absolutely key!

I'm having a hard time being brave today. Sometimes, I don't have the strength to wear that "Everything's *Fine" smile. Sometimes, I am sad. Sad for Henry and embarrassingly sad for myself.

Henry sees the anesthesiologist tomorrow. Surgery next Thursday. He has his 'final' fitting for his wheelchair on Tuesday. I think we'll have to add extra padding to the top straps, to ensure his gtube is protected when he's in the chair, which means another 'final' fitting when his surgery is healed.

Then, in January we start the vision stuff. We are still trying to get to the Peds Opthemoligist to get an official diagnosis of Cortical Visual Impairment. It seems that none of the doctors here are qualified to diagnose it. It's pretty clear to me, after reading his Mri, and after seeing his visual responses, that he does have CVI... but we'll need to drive 4 hours to have someone with a string of letters behind their name, to sign the papers. Then we can get Henry on a Visual Therapy plan. Currently, we're sort of winging it, with the little knowledge that we do have. More resources will be available to us with the official diagnosis.

Anyhow, I plan on taking pictures of Henry's fitting today. It takes the sting out of it for me, if I force myself to record it from a visual perspective.

Sometimes, I am not brave.

Tuesday, December 14, 2010

In the beginning...

I've been wanting to make this video for a while. As I sat down this morning, with a song in mind, and a ton of pictures to go through - I realized that I had no pictures from when Henry was in the hospital. I had to ask my mom to send me some. As I was going through her pics, I bawled. I hadn't taken any pics. I was in shock and denial. I was completely unprepared.
As I began sifting through the hundreds of pictures, the feelings seem to be imprinted on some more than others. I remember what I was thinking and how I was feeling when they were taken.
I finished up my selection and tried to import the song that I wanted to use... and due to freaking restrictions, it wouldn't work. So, I spent another hour trying to trim down something that I could use.
I am not great at editing audio. So I apologize in advance...

But this is a series of pictures from Henry's first hours to just a week ago. The first few are hard for me to look at, but I think they are a part of his story.

video

Monday, December 13, 2010

Amazing!

We're gearing up for a busy few weeks. Henry has fittings for his braces, and a meeting with the anesthesiologist this week. He's already met with one PT and his ET. We went over some vision stimulus tools. They call it augmentative and alternative therapy. We have a light box on loan, and a toy hooked to a switch. It's Henry's first attempt at cause and effect using a switch. The light startles him, so we'll introduce both things slowly. I love the light box. I think we could even use it without the light on.
Light Box

Switch box. We plug the box intot he outlet, plug the ball and the 'switch' into the box.

'Switch' for henry to turn on the toy. It response with a light touch instantly.

The toy lights up and rotates when triggered by the 'switch'

Toy when not triggered.


We'll continue to try adding these excersizes to his daily routine. There are only so many hours in a day!
We've also just got instruction on massage. Henry's tummy sometimes gets uncomfortable from his eating issues. He can't take in enough water so suffers from bouts of constipation. The message should help 'move things along.'

That's what we did Monday! Bring on Tuesday! 

Wednesday, December 8, 2010

SnowFlakes

Ok, we have a final date for surgery. December 23rd. We'll be in the hospital over the holiday. I'm trying to stay upbeat. Christmas this year will be a bare one, anyway. I wonder id the timing is the Universes way of forcing us to focus on the right stuff!
Christmas, is about family for us. Gratitude for life and family. If one of us has to be in the hospital, then we'll all be at the hospital. I'll ask the big kids to help me decorate with handmade snowflakes and paper ornaments. We'll wrap up my little herby dolls and give them to any other children that have to be in surgery recovery too. If we focus on how fortunate we are, we won't have time to feel sorry for ourselves!

Prayers and positive thoughts are welcome! (If you want to send paper snowflakes to decorate Henry's hospital room, send me an email ( tritegreen @ gmail . com ) and I'll give you our mailing address.)

Next week we have the leg brace fitting. After that we have the final fitting for the wheelchair, with accomidations to be made for the Gtube.

I'm still waiting on a call from a masseur... we may need to make a few more phone calls to get that ball rolling. January we will revisit the Cortical Visual Impairment, and hopefully get an official diagnosis - so that we can start therapy for his vision!

Monday, December 6, 2010

Scheduling Surgery!

Dr. Wadie confirmed our suspicions. After trying to find the right floor, and the right office, we sat in Dr. Wadies office and discussed both procedures, and how Henry will need both. We were informed that Henry's reflux could get worse if we do the Gtube. So the nissan fundaplication will be an eventual need... there are risks to the 'wrap' as he called it. Because the stitching is also attached to the stomach muscles and diaphram, it's possible for the stitches to be dislodged and may need an eventual re-evaluation... He said that we don't <i>have</i> to do the 'wrap' but it's very likely that he will need it.
So, my opinion... the odds of Henry's stitches being dislodged are lower than the eventual need for the 'wrap'... Do the wrap with the Gtube, so that we don't have to go back and do another procedure. If he needs the stitches re-stitched, we'll deal with it then...

Henry has gained weight. Every time we take Henry to an appointment, he needs to be weighted. Have you ever weighed a child that has no muscle control? Well, I have to hold him on the scale, then pass him off to someone so that we can get MY weight and subtract it, to get his. It seems petty, but I hate the scale, and an already stressful appointment, somehow gets amped when everyone in the world gets to see the scale flash an extraordinary amount of pounds on the digital scale... (I'm totally having a pity party!) But, to change the subject, Henry's eating has been more concentrated and successful... We haven't tried any solid or pureed food for nearly two months, and he hasn't thrown up but a couple of times, in those months! So thank goodness for small rewards!

After this surgery we meet with a nutrition specialist, and an OT to discuss a 'feeding plan'. We'll need to coordinate tube feedings with oral exercises, so that there is an eventual removal of the tube, if at all possible. Surgery is just one step in this process, but there is hope and we're aiming high.

Henry will be fitted for leg braces the day before his surgery. He'll probably have the braces, his tube and the final fitting of his wheelchair before the end of the year.

It's almost overwhelming. Almost. One thing at a time. Distractions from life, and the other children - keep my head from obsessing and ruminating on the ins and outs of Henry's issues. Lewis is nearly crawling, Anastasia starts basketball - the quad team, and Zane want to explore Homeschooling options. They'll keep me busy!

Sunday, December 5, 2010

Success!

We're still on the search for advertisers and sponsors! But we have, so far been very lucky with support and enthusiasm!
I love editing and arranging photographs and altering text to make beautiful and eye catching links! Please ask questions and state concerns! We want you to have the best experience possible!

______________________________

Henry update:
He meets with a Gastro Surgeon tomorrow. We'll discuss whether he needs a Gtube or a nissan fundoplacation. Or both! Let's hope the snow doesn't hinder the appointment this time!
We'll post news of surgery as soon as we know anything!

Friday, December 3, 2010

Fundraising success! Keep on Truckin'!

The word is out! We are making connections, have several ads in the final editing stages and are continuing to spread the word!
So many people have shown support and shown interest in what we're trying to do here!

Today we're looking for websites and Etsy shops/proprieters to showcase over at Rebecca's Whims. We have a guest blogger at You Have a Kid So Now What, and several more ad spaces go up here!

It's been a busy but productive week! Let's keep it going!

Tuesday, November 30, 2010

Thank you!

Henry had physical therapy with Dafni today. Henry was falling asleep in the van on the way, so he was not thrilled to be working out! We did get an opportunity to tilt his chair all the way back. He seems to be quite comfy in the chair when it's inclined all the way. He rested well while we were waiting for Dafni. We were in the small gym. There is a mat on a hydraulic system. It's like th blue mats from gym class, but in a system that moves up and down to accommodate special needs.
We always have a goal, when working with Henry and his stretching. Currently we are flexing his hips, helping him learn to use muscles for transition between laying, sitting, and eventual standing. He's doing well, and we see improvement. It's frightening sometimes, to have hope that he'll walk. But I keep taking him to physical therapy, now for preventative measures. It seems less dangerous to stave off the need for surgery than to have hope for him being able to walk.
The insurance finally accepted our request for Pediasure. We spoke with the distribution company and should be receiving a months supply within the week. What a relief!

Henry's sleeping right now. He had a restless night, and a busy afternoon. Today during his PT I noticed white trying to pop through some swollen and red gums. He's getting an eye tooth! Poor kidlet! Those are the worst!

In other blogging news, I read a blog today about a mom and a dad at odds over feeding their toddler. Bird on the Street. It gave me a chuckle and a little pain. Sometimes we forget how we suffered and struggled. I hope that as things get easier with Henry, and as we become more accustomed to his needs, we don't complain, and that we remember how tough it was. I don't want to take our great fortune for granted. We have a son, we have wonderful clinicians, friends and family, we have healthy and thriving children... we have love and simple pleasures.
Imagine how difficult life might be for us, if we lived in a rural area, or that we didn't have such amazing health coverage.

Products... Etsy store owners...

Henry's Heroes Facebook page is hosting a fundraiser! We're trying to raise money to buy a van or alter the currently family van so that Henry's wheelchair can be used with more efficiency.

Here's how it works:
Kind folks donate items.
Kind folks purchase these donated items.

What's been donated?
Art
Stationary
Handmade items
Photographs
Dolls Cloths

What can be donated?
Anything
Goods
Services

Are you a crafter? Are you a collector wishing to make some space for new purchases? Do you scrapbook? Do you have a pile of crocheted or knitted hats and scarves that have no home? Do you have a box full of hand stamped cards that have no where to live? Consider give these items a home on Henry's Heroes Fundraiser!

Are you a business owner? Does your company offer services? Consider donating a certificate for services to Henry's Heroes Fundraiser!

Do you have an Etsy shop? Do you have a website? Consider donating an example of your goods and wears to Henry's Heroes.

We link all items (unless requested otherwise) back to the original donor. Your website and Facebook page with be visited by folks interested in your goods and services!

<3

Want to donate - send an email (tritegreen@gmail.com) with a picture of the item, the suggested retail value, and where the item ships from.

We will build treasuries. We will Tweet, Facebook and blog about your shop and your Henry's Heroes products!

Anything helps!
Thank you for reading,
and good luck with your sales!

Monday, November 29, 2010

Pages/Index and general update!

The index has been added to with info about advertising! There is also a bit about Henry and an index with scheduled appointments for doctors and therapists. We spoke with his one of his physical therapists today, and will be adding a massage therapist to his weekly schedule. We are also waiting to hear from the Eye Institute in Portland, for an official diagnosis of Henry's vision impairment. We suspect it's Cortical Visual Impairment as his Mri suggested, but need an official write up to plug Henry into the right therapy!

We measured Henry's wheelchair, and it officially does not fit into the minivan unless we take it apart and fold it up... So, I guess we'll be getting well acquainted with the manual! The chair arrived last Monday, and we have yet to take it out. I'm not that brave yet!

Sunday, November 28, 2010

Etsy and Facebook

We are currently attempting to marry this blog, the facebook page and your stores in the attempts to raise awareness for Cerebral Palsy and funds for a van for Henry.

We can't sell other peoples handmade items. If you would like to list an item in your Etsy store (donate funds made from that item through the link on this blog), let us know it's for Henry's Heroes and we'll advertise your shop and the items for sale for donation!

There's an example of how it could look in your Etsy store at Rebecca's Whims. Rebecca has committed to adding the total from the sales of the items in the Henry's Heroes section, to the link on the right of this blog! We'll be able to keep a running total! :-)


Another way that we can raise $$ is to sell space on our blog. Simply send an image no larger than 200x200 pixels and the web address you'd like to like to, (blogs, etsy stores, other sites!) and we'll put it up on this blog! There aren't a lot of visitors yet, and prices will reflect that. Email me for details. (tritegreen @ gmail.com)