AJ Patnode Blog

laser peg

2012-01-07T13:01:00.000-08:00

2011-12-26T16:16:00.000-08:00

Our newest family member, Ruby-Noel. See photos below.

2011-12-26T16:03:00.000-08:00

2011-12-26T15:55:00.000-08:00

2011-12-11T08:36:00.000-08:00

What a fun party. More photos to come...
Thank you to everyone who made this a VERY special day for Mr AJ. He had a great time as we all did.

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2011-12-11T07:14:00.000-08:00

2011-12-10T07:36:00.000-08:00

AJ's artwork featured in the 2012 PSA calendar. Way to go AJ!!!

2011-12-10T07:31:00.000-08:00

T minus 19 hours until the adventure begins...

Look back to AJ's 12th birthday posts, it's a journey of AJ's birth.
More photos to come.

2011-12-10T07:28:00.000-08:00

2011-12-10T07:27:00.000-08:00

2011-12-10T07:24:00.000-08:00

2011-11-30T15:01:00.000-08:00

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2011-11-30T14:45:00.000-08:00

AJ's Birthday photos 2010

2011-05-03T15:14:00.000-07:00

What a fun time had by all. Thanks everyone for making AJ's special day so wonderful!!!!

2010-12-17T06:38:00.001-08:00

12 years ago today...

So there I was, home alone at 5pm, needing to go to the hospital. By 6pm, your dad showed up, and grandma Char about 15 minutes later. Little did we know grandma has a double life as a race car driver. We were checked into the hospital around 7pm. We were bumped from surgery for a set of twins to be delivered and then taken into surgery around 8pm.

At 8:46, you were born, all 3 pounds and 7 ounces of you.

From there you have made your own story.

Happy Birthday to you AJ!!!! 12 years later and going strong!!!!

I love you, mom.

2010-12-14T13:13:00.001-08:00

12 years ago on Tuesday I started going into labor although it was labled "Braxton Hicks". Well I huffed and puffed, reassuring your Dad and grandma Char that the Doctors said "Braxton Hicks" after an unscheduled appointment.

I will get a bit ahead of myself to say this went on for three days. On Thursday your Dad had an interview and your Grandma had something going on and it was very hard to convince them to continue with their plans and leave me home alone. I tried sleeping (funny I know, but I tried). Grandma Char called about every hour to see how I was doing. Still huffing and puffing my Braxton Hicks I told her.

Around 5 pm I had something change and called the closing doctor's office to be told to come into Labor and Delivery.

Your story will continue in a few more days...

2010-12-09T06:32:00.000-08:00

About this time in 1998, we would be told your birthdate would be January 3rd. What a way to ring in the new year. We have twice weekly appointments with the doctor. Ultra sounds every time. The doctor has a plan for your delivery with your Frank Breech position in mind. But a good plan makes people feel like they have it under control. So we were just patiently waiting for your arrival. Hoping to meet you. Not getting too ahead of ourselves.
So much for my idea of having your delivery at home. Thus I nick-named myself Willow to remind myself to be flexible. That would come to be very handy advice indeed.
I think the baby crib was up by now, all the clothes washed and put away. Snuggly blankets waiting. Grandma Bettie had made a christening gown and blanket for you. Oh, and since I adore Winnie The Pooh, that's what we were surrounded with. Silly willy nilly old bear.
You and I had many talks about doing your best and how much your dad and I loved you. I think Grandma Char patted my tummy and sent her love as often as she saw me. You are one very loved little "bump".

2010-11-23T07:03:00.000-08:00

In the final weeks before you were born, we discovered you were in a Frank Breech position and I would need a c-section. Our many doctor visits would reveal a heart beat that sounded like a racetrack and that made me happy. We knew you were still with us. The best sound in the whole world.

I sang silly made up songs and hugged my tummy. Prepared your baby things. Your Aunt Bonni let us borrow her children's baby bassinet. Grandma Bettie sewed a Winnie-the-Pooh bumper and sheets for it. We still had until January, but were expecting your arrival.

I tried to say focused on NOW and not get too ahead of myself. We had to wait for more information. And you were the only one who could reveal that to us.

We hoped we could meet you, even if it was only for a little while.

2010-11-18T15:46:00.001-08:00

So, about this time in 1998 we found out our baby would be a boy. His due date is January 15.
We had no idea what Arthrogryposis was or what it would mean for our son. But they gave a very grim outlook.
Our greatest wish was to meet him and let him know us, even if it was a for a little while.

2010-11-14T07:15:00.000-08:00

This link is for Exceptional Preschoolers, AJ's video is featured here.

Thank you Miss Rachel for your gift of teaching. We wish for you great success.

http://exceptionalpreschoolers.org/welcome/

2010-11-11T13:25:00.000-08:00

AJ is Turning 12 soon...

What's new in the past few years for AJ? Well, with the continued support of contributors we were able to remodel our bathroom tub wall. Now AJ can use his shower chair without getting his feet squished by the wall. What a great feeling that is compared with a bed bath. Oh, as an added bonus, we have the dryer running with warmed towels so he won't freeze on the way back to his room. AJ is very cozy.

We were able to purchase a Transfer Lift Chair to safely move AJ from room to room. Our previous methods were not good for AJ's positioning or our backs. We LOVE the Transfer Lift Chair! Our backs are very happy too. We received the chair on our 12th anniversary. What an awesome gift!

We also have had other household items such as hot water heater and washing machine needing to be replaced. As we average 3-5 loads of laundry a day we kept Grandpa Francis and Grandma Char busy while using their machine. Thanks Dad & Mom. AJ sure appreciated clean linens and drool cloths.

AJ was a recipient of Make A Wish this year. He received sound activated lights and a speaker set up that works through his TV and goes into his bedroom. Light never sounded so good! With the lights we received an added bonus as the creator of the lights, Ken, has befriended us and now is a part of our family.

Speaking of added family, Alin has also been added into the mix. We interact via the internet and Skype (video). Three hour time zones don't matter when a connection is made. We enjoy Alin's music picks dancing to AJ's lights. It makes for quite the party from Washington to Illinois. Alin made a U-Tube video with AJ and the light driver lights in it. Alin and AJ have different disabilities, but very similar lifestyles.

Via AJ's TV we can connect his computer and have been looking up topics to back up what he was focusing on in his school lesson. For instance, AJ was learning about safari animals and with the help of Teacher Mary has now been watching Africam.com. We are looking into more interests for AJ via the internet. We are also hoping to have AJ's Springboard (communication device) be able to allow for some navigation on the internet. Our hope is that it will work with a voice command set up. This is in the very early stages now.

We were recently contacted by a teacher in NY who attended a program that started off with the showing of AJ and Grandpa Francis' video. We were very excited to know that something we do daily can inspire others and confirm that what we do is important not only in our family life, but that it is spreading out to reach others. It's our way of paying it forward. Being on the receiving end quite often and then being able to give in this way is VERY rewarding.

Visit AJ's BLOG at ajpatnode.com for more information regarding Ken's lights, Alin's U-Tube video, future posts about his computer or AJ & Grandpa's video on the website.

May God bless you. Thank you for blessing our lives with yours.

The Patnode's

This is what we are sending out for this years update.

2010-11-06T15:36:00.000-07:00

Just learned a presentation of AJ's video (see Grandpa's Creative Construction) has made it to NY.

We are very excited to know something we stand by inspires others.

Very cool.

2010-11-05T06:15:00.000-07:00

We are currently using AJ's computer to access information to coincide with his school work. For example one of his lessons was about the desert, so we came up with a documentary about deserts. AJ was very interested.

We are currently looking at Africam.com to view the happenings at a water hole. Unfortunately it is nighttime in Africa when AJ is awake. We will continue to see what we can discover.

Some topics have been hit and miss with finding information. We look foreword to new adventures via the web.

2010-09-30T10:19:00.000-07:00

Here is what AJ has been doing:

http://www.youtube.com/watch?v=tsfZ0C9yjjU AJ & Alin

http://litedriver.com/ AJ & his new lights

2010-05-11T12:16:00.000-07:00

Here is what AJ has been up to lately. See link below.

http://litedriver.com/

Test

2010-05-07T10:11:00.001-07:00

This is a test.

More Birthday!!!!

2009-12-17T10:32:00.000-08:00

Here's one with Dad!!

Happy 11th Birthday AJ!!!!

2009-12-17T09:50:00.000-08:00

2009-11-24T09:42:00.000-08:00

Wishing all of you a safe and joyful Thanksgiving.

AJ and our family have been featured in two newspapers these past few days:

The Longview Daily News

http://www.tdn.com/articles/2009/11/23/top_story/doc4b0a39af3f949835107399.txt

The Oregonian

http://www.oregonlive.com/special/sharing/index.ssf/2009/11/everyone_holds_together_and_ho.html

November 4, 2009

2009-11-04T13:58:00.000-08:00

We are all doing well.

We recently purchased a Transfer Lift II chair for AJ. This is so much safer for AJ than Mike or I carrying him (our backs are thankful!). On the downside, Mike and I gave up that close contact we had while carrying him.

I guess as the saying goes, "no news is good news".

Have a wonderful day!

It's healing!!!

2009-07-12T11:52:00.000-07:00

AJ's arm is healing slowly, but healing none the less. We are still taking it very easy and hope to resume AJ's regular routine in several more weeks.

AJ is off all pain meds and doing well. His incoming teeth are still an issue, but at the moment, not as bad.

Meanwhile...AJ had a visit especially for him from cousin Adam for a few days two weeks ago. Adam is a great kid and we had a wonderful time. He's hoping to come again. We are looking foreword to seeing him again.

Cousin Wilson has a job and we are very proud of him. His stay is now upgraded to indefinitely.

I am very honored as auntie to be able to help in his new endeavor.

Mike and the girls have been to the Gamache Family Reunion, Patnode Siblings & Families Fourth Of July (see above photo) and had a great time!! They came home a little refreshed.

The girls are looking foreword to more camping trips with Grandma & Grandpa on the Columbia River.

Have an amazing day.

2009-06-23T11:18:00.000-07:00

Not many new changes with AJ's arm. He will have another x-ray next week and this news will tell us if his bone is healing etc...

I haven't had another chance to help him with his Farm Town, but hope to soon.

Mike and the girls are getting ready to leave for a family reunion this weekend. I'm excited for them.

AJ & I will hold down the fort here with the help of my nephew Wilson.

Have an amazing day!

2009-06-18T18:24:00.000-07:00

I think generally AJ is having a better day then yesterday. Still a lot of vocalizing.

Today we tackled our first try at Farm Town (on Facebook). AJ picked the gift to send and chose the crops to plant. There were 15 gifts to receive and he watched here and there with that. With his choosing certain things I will keep trying this out. Something new and different in AJ's world.

2009-06-17T14:04:00.000-07:00

AJ's past 24+ hours have been more spent being more vocal.

We are trying to get him more relaxed and pain free if this is the issue.

Our house has been really busy & lots of different emotions running around so we are not sure what exactly is the problem.

We are only a week or two from another x-ray to see if his bone is calcifying. Time sure flies around here!

Have a great day!!

2009-06-15T19:35:00.000-07:00

Well, AJ's tolerating our steady routine of decreasing pain meds. He's feeling pretty good.

He's loving his feet being massaged. (again, thanks Deeda!)

We seem to be "addicted" to Farm Town on Facebook and my newest intent is to see if AJ is interested.

School is out for AJ on Thursday.

Have a great day!

2009-06-13T14:48:00.000-07:00

We are continuing to space the time between pain meds and AJ is doing well with this.

Quiet today, just me and AJ at the moment. Relaxed. (Phew!)

2009-06-12T07:19:00.000-07:00

AJ had a good day yesterday and a good night last night.

We're moving slow with much of anything with him.

I've had some questions about why they are not casting AJ's arm, this is protocol for where his break is. They don't cast this type of break. AJ's bone doctor also agrees with this.

It can sometimes be hard to sit and wait as we are geared for "let's do something to fix it".

Yet again, AJ is really good at telling us what he needs although he is non-verbal.

AJ is also really good at feeling other peoples emotions. For example if someone comes into the home distraught, he'll start crying. So it's important that we maintain a relaxed atmosphere especially while he is healing. Although our home is pretty relaxed generally.

2009-06-11T13:03:00.000-07:00

Today the bricks felt a little heavier.

2009-06-10T12:30:00.000-07:00

AJ is doing well with Tylenol and Ibuprofen. Next step is to have longer stretches between meds. Right now he is getting and needing a pain med every three hours alternating the meds.

We tried his vest therapy (chest P.T.) for 1 minute using a variation. We will continue to do this increasing the amount of time as per toleration. AJ's typical day would include one hour of this treatment. So we shall see what AJ can tolerate.

Elisabeth has only one more day left of school. AJ has six more days. His tutor comes here as has been the case these past several years. Katharine was our two weeks ago, so our house is bubbling with summer time energy. The girls and I are going to get cousin Wilson for a visit. I am a very lucky Auntie, this will make the 9th year in a row I've (well, we) have had this set of nephew and nieces come to stay. I love it!!!!

I put up a chinese lantern in AJ's room, his eyes got real BIG, he likes it. He spins it around by way of a modified disco light. Hopefully I can figure out how to put all three of those lanterns up without knocking over the nurses.

Have an amazing day!

perspective

2009-06-09T10:34:00.000-07:00

Little by little, like tiny bricks, it is dawning on me how much of an impact AJ's broken arm has on him.

I cannot even describe my feelings on this. I've tried but keep deleting what I've written.

This will be an interesting summer.

2009-06-08T21:35:00.000-07:00

For the most part AJ had a good day.

The afternoon was a little rough on him for a few hours (we had to change bedding, too much moving around). He now is resting quietly.

The girls have been having a great time camping at an RV part with Grandma & Grandpa for the past two weeks.

A little sister still has a few school days left, so they take her to school in the morning.

It's good they can have some R&R.

2009-06-08T15:48:00.000-07:00

One of the side effects of AJ's pain med is becoming a bit of a problem. His secretions (spit) is drying up. So, his trach secretions are very dry and sticky for suctioning. We are temporarily stopping his vest therapy (chest p.t.) and this isn't helping either.

AJ continues to be comfortable and we are working on extra hydration and other forms of chest p.t. to resolve the current issues.

We are still icing his arm and so far do not have swollen fingers. So that's good.

Thank goodness for air conditioning. It's nice and sunny today.

2009-06-08T10:30:00.000-07:00

I had a question about how long it will take AJ to recover. (thanks Peter)

In 3-4 weeks we will have another x-ray to see if the bone is calcified.

So as far as AJ's summer goes, he won't be in his wheelchair anytime soon.

I'm kinda bummed about that, but life keeps rolling on regardless of the plans on my calendar.

I'm still excited for summer to be here, and now I'm going to have to figure out what to do to entertain AJ at home. Suggestions?

2009-06-08T10:06:00.000-07:00

AJ continued to have a good night last night. That was a relief!

We are learning new tricks to reposition AJ while keep his arm immobilized. We are using a sling, but there is still a lot of room for movement. With already being bed bound, we also have to keep in mind the possibility of bed sores. So as I said, we are learning new tricks.

At least we have a nurse today so Mike & I can have a bit of a break.

2009-06-07T23:05:00.000-07:00

AJ's asleep!!! Comfortably!!!! I knew he'd have to sleep eventually!!!!

Dad's on duty, I'm going to bed too!!!

Again, thanks for all the well wishes.

AJ's arm

2009-06-07T18:22:00.000-07:00

AJ's Doctor called as she heard back from the bone Doctor, he recommended doing the things we already are. So no surgery.

AJ has still not slept except for 1 1/2 hours this morning from being up all night.

Pain wise AJ is doing better than last night.

Through his communication device, I am so glad he can tell me to reposition him, or that his arm hurts so I can try something else for comfort.

I even rubbed his feet for a long while at the suggestion of one of my sisters (Thanks Deeda) he liked that until he needed to be repositioned. Now his room is permeating with essential oils. (Thumbs up!!)

Thanks for the prayers and well wishes!

Aj's arm

2009-06-07T09:32:00.000-07:00

It's confirmed through x-ray... yes indeed AJ's arm is broken. (not a surprise)

Although AJ's Doctor is checking with bone Doctor, it is unlikely a surgery would be beneficial. AJ would be at very high risk for surgery. So he tends to not be a good candidate.

Stronger pain meds are being called in now.

AJ's Doctor is wonderful and we appreciate her so much!!!!

And of course these things happen on the wee hours of the weekend!!

I'll post anything substantial as it comes up.

Thanks for your thoughts and prayers.

AJ's arm

2009-06-07T09:12:00.000-07:00

Well, with fragile, very thin bones this is to be expected.

We believe AJ has a broken arm. (we are still waiting for confirmation on x-rays)

Thursday night during range of motion (or exercises), the nurse noticed his arm went from being stiff to loose and was moving where movement should not be.

AJ was not crying at that time, no swelling. All his vitals were fine.

This continued to be until Sunday early morning, where bruising was now noted and swelling. And he kept himself up with crying all night.

At this time we are working on a better pain control and keeping him as comfortable as we can. His vitals are still good, but he is now in a lot more pain.

Check in for more updates.

2009-05-14T10:43:00.001-07:00

Space, the final frontier....

If you can't laugh at yourself, then someone else can!!=.)

I was surprised how alike Katharine and AJ look.

The cat's could create their own sci-fi characters.

To make your own, visit: http://www.cheez-it.com/

...live long and prosper

Mother's Day

2009-05-08T12:02:00.000-07:00

In all I've accomplished in my life thus far, I can say that becoming a Mother has been the most rewarding.

That goes to say the most difficult as well.

I am always amazed at the lessons that surround me. I think some of my best teachers have been my children.

The lessons I have learned from these three little angels make me appreciate even more than what I thought was possible, the love I have for my Mother and Mother in law.

May this Mother's day find you well and enjoying those who mean the most to you.

2009-05-07T20:35:00.000-07:00

So what has AJ been up to lately?

Well, he is pretty much bed bound. We are hoping with warmer weather that he will tolerate being up in his wheelchair so he can go on his beloved walks.

As far as his stander, when we get him up it hurts him. So, we have stopped that for now.

What does he do in bed all day?

School in the morning. His tutor comes to him.

He loves his new pastime of watching TV, especially Star Trek. He runs a switch that operates light shows and a mobile that we hang stuff off of. Such as streamers, things that reflect light, or anything really that is interesting as it spins.

He is apart of the Washington Talking Books & Braille Library. So he listens to a variety of age appropriate books on tape.

AJ has several therapies during his day. Range of Motion, stretches, and chest PT. The chest PT we do is a vest that has a hose connected to it (kind of like the old hair dryers or a vacuum hose) this pulsates air through he vest. The intent is to bring up any sitting mucus in his lungs. For AJ, it has been a wonder therapy. We have used it for 1 1/2 years. AJ is rarely ill, and if so, extremely mild compared to previous years!!!

Music is another favorite. He is easy going, I have not had him complain about any music that I can remember. We listen to a wide variety. Especially cultural. That has been fun to collect.

AJ continues to use his Springboard for communication. See latest news on AJ's web page for more on that.

His little sisters always bring some excitement into the room.

Have a great day!!!!

4/11/2009

2009-04-11T21:16:00.000-07:00

In Memory Of

Maureen "Mo" Patnode

10/19/1968 to 2/25/2009

The artwork (wood burning onto a pine door) was her last and her favorite.

You are a treasure Mo, a jewel that we will always keep in our hearts.

We MISS you!!!!

Mike found a post she had on Flickr: http:/www.flickr.com/photos/33069218@N06/3083998296/

Obituary: http://www.yakimaherald.com/obits/2009/03/04/maureen-dolores-mo-patnode

January 17, 2009

2009-01-17T16:06:00.000-08:00

Welcome 2009!!

It amazes me how fast children grow.

It inspires me when they come up with such curious questions.

It captivates me when they show a little independence.

It motivates me when they put their dreams into action.

It touches me deeply when they just need their mom.

I said when my children were born what great teachers they would be and I hoped I would be a good student. I also said how honored I am to be their mom (Mike is also a very honored dad). I never knew what I wanted to "grow up and be", but I don't think any job would ever have given me the many aspects to learn and grow as the role I take as mom.

Have an amazing day!!!

December 23, 2008

2008-12-23T09:29:00.000-08:00

AJ is now ten!!!! What an amazing journey this has been thus far.

A new interest for AJ is TV. He has become a sci-fi fan thus joining in his Dad, sister Elisabeth and Grandma Bettie's interests.

Photo's are from AJ's 10th Birthday Party sponsored by KC's St. Philip's Parish.

Have a wonderful Christmas.

Loree

September 3, 2008

2008-09-03T08:19:00.000-07:00

AJ, Elisabeth & Katharine had a GREAT time at thier soon to be BIRTHDAY PARTY!!!! The theme was a tropical carnival so we had many festive decorations and activities for everyone including a cupcake walk, fishing game, face painting, craft projects, a ball toss and AJ's inspiration booth. AJ had been practicing for 3 weeks prior to the party with a page on his communication device that was all about his inpsiration booth. AJ would ask for a "ticket please" then say "pick a box" for the receiver to partake. AJ was a little shy and didn't use his springboard communication device very much, but with 77 people that was a lot to take in. With a little prompting and patience, he was able to get a few groups of people to take part. We are very proud of all AJ's hard work. You go AJ!!!!
It was a great party thanks to all our guests. I made sure I was able to at least say hello by placing a Lei around people's necks. I was glad I did that because visiting for very long was not going to happen. Did I mention 77 guests? =) We finished the evening with a family & friend dinner Mexican style for those who came from the Yakima Valley to be with us. That was about 20 people or so.
I keep having people respond "THAT WAS A GREAT PARTY!!!!!"
Yes, it was. We had a lot of fun.
Treasured guests, thanks again for coming. We wanted something special for a soon to be 10 birthday for AJ and are so glad we were able to include his sisters who will be celebrating there birthdays this month. And that couldn't have been so successful without your participation.
God Bless you,
Loree

August 13,2008

2008-08-13T08:24:00.000-07:00

First of all, THANK YOU to all who have kept AJ and our family in your thoughts, prayers and actions. We greatly appreciate it.

AJ will be turning 10 in December. This year we decided to celebrate early with Elisabeth & Katharine included (both girls celebrate their birthdays in September). So, on August 23rd we will be having a Early Birthday Open House. We are all looking foreword to that!!

Have an AMAZING day!!!!

First Post

2008-08-12T16:13:00.001-07:00

This is a test...

AJ Patnode Blog

laser peg

AJ's Birthday photos 2010

So, about this time in 1998 we found out our baby would be a boy. His due date is January 15.We had no idea what Arthrogryposis was or what it would mean for our son. But they gave a very grim outlook.Our greatest wish was to meet him and let him know us, even if it was a for a little while.

Test

More Birthday!!!!

Happy 11th Birthday AJ!!!!

November 4, 2009

It's healing!!!

perspective

AJ's arm

Aj's arm

AJ's arm

Mother's Day

4/11/2009

January 17, 2009

December 23, 2008

September 3, 2008

August 13,2008

First Post

So, about this time in 1998 we found out our baby would be a boy. His due date is January 15.
We had no idea what Arthrogryposis was or what it would mean for our son. But they gave a very grim outlook.
Our greatest wish was to meet him and let him know us, even if it was a for a little while.