Goodbye Hisser

Our dear old cat Hisser had to be put down today, after
we got the shocking test results of Feline AIDS.

It is transmitted through bite wounds and has a higher occurence in male cats.

It doesn't live long enough on food or water dishes to transfer that way....and we were glad, because we didn't want the rest of our herd to get sick!

Lonnie found Hisser on the side of the road after he was hit by a car.

His jaw was broken and he had other injuries. Lon lovingly nursed him back to health, but Hisser was so scared all he would do is hiss at Lonnie - hence the name!

He was over 10 years old.....we hope he enjoyed his days of loooooong naps at our house.

We will miss him. Rest in peace, Little Hissy, I hope you feel better now!

Wordless Wednesday - What a Laugh!

Me Love Me Some FLOWBEE!

As you can imagine, it is quite difficult to cut Eli's hair.

The combination of not being able to hold his head up very long, arching back and looking to the right, and slobbering lots......makes "haircutting day" few and far between! I dread it...and Eli hates it when it's happening. I hurry as fast as I can with the clippers, and try to keep the hairs out of his mouth....but it's just plain stressful!



So - my dear readers - I present to you the best invention ever.............
the FLOWBEE!!!

You just plug in the hair cutting part to an electrical outlet, hook the hose up to your vacuum and it sucks the hair up as it cuts! Genius people! Absolute brilliance!

I gave Eli this awesome haircut in less than five minutes - with no clean-up afterwards!
Yeah, baby - that's what I'm talkin' about!
Ok -is it just me or did this haircut and pose make my son look instantly older!??? He sure ain't a baby anymore!
(I type this as he lays asleep in my arms just like one! Aren't I lucky! How many of you get to snuggle with your three year olds for naptime? hee hee)

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Now most of you look at the picture below and say, "Uh, what is so special about that, Aim?"
Well, let me tell you! Look closely - he's holding his first finger! It's the first time I've ever seen him do this! To make it even more special he opened his right hand up just as I took the picture.

It made my heart melt! This is one of the things most parents take for granted. A child grabbing his hands together! It's one of the first things that happens, right? Not for us!

As the Mom to a special needs child, it was a milestone we waited well over two years to see! Eli found his hands just this year! So, each time I see him holding onto himself - I savor it. I photograph it. I document, if only in my mind....with great anticipation for what might come next.....will he ever grab his toes?

This is where I must give thanks to the Lord! He made my beautiful son, He knows the timing for all Eli will accomplish. He is teaching me patience and understanding at a level I never knew existed! He is good......really good!
Amen.

And the Leaves, Leaves, Leaves came Down, Down, Down...

I love our new house!

After house hunting for almost nine months, I just kept saying, 'I'll know the house when I see it'. As we were driving up the long driveway to this house, and I saw all the big trees, and I immediately knew this was my new house! The backyard is so amazing. I positively LOVE the weeping Birch trees, and the HUGE tree for climbing that I highlighted in my post about Eli's birthday party in August.


It crossed my mind that these trees would be work in Autumn.....as the leaves started to fall............but Oh My Stars!....this is insane! I'm begging my dear sweet hubby to go buy a lawn sweeper. A person can only rake so much!



DO YOU THINK WE NEED ONE?



Nice piles of leaves awaiting their fate of being transported out into the pasture.




TODAY THE WIND BLEW........AND MORE LEAVES FELL ON TOP OF OUR PILES!

Are you kidding me? LOL!

Even though................I still love our house!

Thank you Lord for the awesome blessing of allowing us to be stewards to this beautiful property! The work is great, but so is the reward!
Amen!

Treadmill Therapy

On Thursday, October 30th, we were part of a seminar held at Childrens Village (http://www.yakimachildrensvillage.org/). Ginny Paleg (http://www.ginnypaleg.com/) is a Neuro-Developmental Treatment Physical Therapist from the Washington D.C. area, who specializes in kids with severe physical challenges. She came and spoke to a group of local therapist from the Village, Schools, and other facilities.
Part of the program was to show examples of kids using the treadmill. They asked us to bring Eli as one of their subjects. :)

As you can see, Eli is suspended from a harness, and then held by therapists. They moved his legs like he was walking...and then would give him the opportunity to do it by himself.
HE TRIED SO HARD...AND HE COULD DO IT!

After our very disappointing October full of appointments, where we felt no one had anything to offer us regarding helping Eli - we felt Ginny Paleg was a gift. A huge blessing to us! She saw things in Eli that others don't take the time to see. She noticed it took him about 8 minutes to respond to a request (very typical for CP kids). She saw that he still has the raw reflex of 'walking'. When he's put in a standing position, he'll lift his feet off the ground. It's slow, and intermittent...but it's still there! She could see how hard he was trying by watching his face and his body language. SHE GAVE US HOPE! She was awesome. :)

When a Doctor sees him for 30 minutes once a year - they cannot get a good idea of who our boy really is and what he can do! He has potential....he just has severe physical limitations.
So, we are very THANKFUL for people like Ginny who have made it their life's calling to help these kids have a chance at a more fulfilling life.

We aren't sure what we will do next regarding this kind of therapy. It would be great to have it available at home....so we'll see how it all works out....

Fall Back Time Change

When you have a kid who wakes up by 5 am (90% of the time).....the "Fall Back" time change really stinks! It takes us days to get back on track!
Eli has a hard enough time staying up until 7 pm - so last night he made it until 6 pm new time. Which then made for a 4 am wakening! He was off all morning....didn't want to take a good nap until right before we were supposed to leave for his horse therapy. We had to cancel it. Bummer!

Tonight he made it until 6:35 pm....we'll see what tomorrow brings.....Ugh... :)

UPDATE: He woke up Tuesday at 4:05 am!

Eli the Pirate

Eli had swim therapy today, so I dressed him up in his costume and took him to Children's Village this way. (well, he didn't wear the bandana in the car!)

So, that was the extent of his costume wearing :) And I think he was glad!

HAVE YOU EVER SEEN A CUTER PIRATE, MATEY?

Here he is in therapy, with an intern, Janell. We just LOVE her!

Pumpkin Carving Time!

Time for the annual "Pose with the Pumpkin" photo shoot....

Nice HUGE pumpkin, huh?

If it wouldn't have been so messy - I would have put Eli inside it! LOL!

About 20 minutes after these were taken....Eli was fast asleep!

I had to carve the pumpkin alone, later, while watching "It's the Great Pumpkin, Charlie Brown!" - another annual tradition!

Want to see Eli with previous pumpkins? Here you go...

2007

2006

Awake with His Eyes Closed....

I just had to share this picture with you, because it shows what a horrible time Eli had for two days recovering from his "puke in the eye" episode on 10/19. He is TOTALLY AWAKE in the picture! We are so lucky God blessed him with the need for lots of sleep....so he didn't have to spend too much time in this state.....it was awful for us to watch, and didn't seem like he thought it was much fun either!
What an awful experience! Do any of you have a story to share about something you did that accidentally hurt your own child? Leave the story in my comments section...I'll feel better knowing I'm not the worst Mom on the planet!

Medical Updates

Here is our list of October doctor appointments, and what happened at each.

6th - Dr. Bartlett - Pediatrician -
Stoma Infection

8th - Dr. Hayes - Physiatrist -
Suggested giving Eli Botox Injections in his Aductor muscles in his inner thighs. May help relax him so that diaper changes are easier, and sitting is easier in the carseat and stroller.

9th - Dr. Debley - Pulmonologist -
He said Eli's issues are in his upper airway and we need to see an ENT (Otolaryngology) doctor. He felt that Eli's acid reflux is causing a lot of his congestion while eating. Added a second dose of Prevacid per day. Suggested to try that for two weeks, and if it's not improving add a new drug called Reglan. (We see some improvement, and are not adding Reglan.)

20th - Dr. Bartlett - Pediatrician -
Eye infection (from Puke episode...see 10/19 post.)

21st - Dr. Inglis - ENT/Otolaryngologist -
He did a scope in his office and said Eli's airway looks good. No anatomical abnormalities. Didn't feel that doing the Bronchoscopy the next day would show him anything different, but offered to do it anyway since we were already in Seattle and scheduled in the OR. It was going to be under anesthesia, and with Eli's airway issues, he was at risk for complications....and since the procedure wasn't really necessary we felt it best to cancel. :)

He said adding Zantac may help his reflux even more.

23rd - Dr. Goldberg - Orthopedist -
He said Eli's hips look good. At this point in time, he is not a candidate for surgery. Yahoo!
Since Eli is non-ambulatory he doesn't even think Botox is necessary. (It's usually for kids who are trying to walk but their gait is so bad they need a little help to make it easier.) If we did it, it would be for personal reasons as I stated above regarding seating and diapering.

In a Nutshell:
Eli's brain injury causes his muscles to fire when they shouldn't, and not fire when they should. His airway is floppy and his muscles don't work right - therefore he can't swallow properly and breathing can be difficult sometimes.

We met lots of nice doctors this month, and found that the Playroom at Seattle Children's Hospital is AMAZING! It is where Eli created the beautiful painting in the previous post! After he painted it, he rammed his hand into the paint jar! LOL! His fingers were purple for a few days, and his fingernails were all dirty. I was so proud of my 3 year old son finally getting dirty!!!!! :)

We felt no one had a lot of hope for Eli and there wasn't anything they could offer to do for him.

His airway is compromised.
His life will be difficult.
We will probably spend many more nights in the hospital in his life.

We pray that God lets us continue to take care of Eli for a loooooong time to come.....
Isn't he precious?!
Here he is eating in his new KidKart Stroller, generously given to us by a family in Olympia.

Wordless Wednesday - Eli's Masterpiece

Puke in the Eye - and Chips On Fire!!

Today started out as a very nice day. Tina was available to watch Eli today, so Lon and I had a date planned (movie? go karts?)....and then he was going to come to bible study with me.

11:30 am - Eli pooped while sitting in his KidKart eating lunch. I waited as long as I could because laying him down right after he's eating makes him spit up. I hate making him sit in it, ya know?

12:15 - I attempted a quick diaper change and the whole day went to h#ll in a hand basket! Eli puked. I rolled him over to make sure it ran out of his mouth instead of back down his airway....and I rolled him into his puke! His eye mopped up the acidic yuck that just came out of his stomach! I was horrified. I grabbed a baby wipe and started wiping it off. (NOT a good idea, it's a smelly lavender/chamomile one) Then I got some saline solution and flushed it out. He didn't quite know what to do with himself. I could tell he was very uncomfortable. I felt horrible!

It's naptime after lunch, so I went and layed down with him, but he immediately started getting a runny/stuffy nose. His system started overproducing fluids as it was trying to flush his eye.....and it got his nose going, too! I had to get the suction machine out...to help get all the snot from gagging him.

1:00 pm - He finally fell asleep. Bless his heart.

1:50 pm - He woke up. Well, he was awake, but he won't OPEN HIS EYES! I can tell he is not sure what is going on. It was only his left eye....but his right eye is being sympathetic I guess, and it won't open either. I quickly realized our 2:30 date was not going to happen....but kept hope alive.

2:30 pm - Tina got here. Lon was too worried to leave Eli. No date happening today.

3:00 pm - I ran to Target to get eyedrops. (Did you know there are 52 kinds of eye drops at the store! I had to call the after hours triage nurse through our pediatricians office to make sure what I bought would be OK!)
Meanwhile, Eli fell asleep in Tina's arms....and took a nice 1 hour and 10 minute snooze!

4:10 pm - I got home, Eli woke up. He still won't open his eyes. He's seems scared and/or confused, because obviously, he "can't" see with his eyes closed.

5:30 pm - Lon ran to town to get us dinner, as we neither one felt like making anything, and Eli insisted on being held.

6:30 pm - Lon got home with dinner. I put Eli on the floor for a minute to go make my plate, and was going to hold him while I ate. Lon walks into Eli's dayroom, where I had left him on his tummy - only to find him rolled OFF his mat and doing a face-plant on the heater vent! Oh, yeah - that had to feel good on his sore eyes. YOU'VE GOT TO BE KIDDING ME, RIGHT?

I decide to put dinner in the oven to keep it warm, while I attempted to put Eli to bed for the night. WELL - LON DIDN'T REALIZE I'D ALREADY HEATED THE OVEN! He turns on the BROILER! We had the bag of tortilla chips in there with our meals.

Now, some of you may know, I've had a terrible fear of my house burning down since I was 4 years old, (me and the neighbor girl burned all the trees down in front of our apartments, and my Mom had the Fire Chief talk to us to teach us a lesson and scare us a little! Yeah - we'll he scared me for life!)

6:35 - I'm laying in bed with Eli....and I SMELL SMOKE!
THE BAG OF CHIPS CAUGHT ON FIRE!

We now have burn marks where chips were on fire on the floor. Lon was completely beside himself with all the trauma that had happened today.
I just couldn't help but laugh.....inside of course, because Lon wasn't in the mood to see the funny side yet.

8:10 pm - As I sit here finishing this post - I'm dying laughing. Lon wants me to come watch America's Funniest Videos.....the perfect thing for the end of this insane day!

The baby monitor is quiet. My son is eating dinner and sleeping well.

~Thank you, Lord. Please touch my son and take away his pain. Heal his eye, and let him be able to see in the morning. Thank you for helping me during these tough days. ~Amen

Infections!

I know I've neglected you all for three weeks now. Sorry!

Eli got a little cold that started on the 24th of September. By the weekend he was visibly in more pain, so Monday we went to the Doctor, and found out he had an ear infection.

He started getting better, and we were so glad....then the next weekend - he was in REALLY BAD PAIN!

When Eli is in pain, he looks like a fish out of water when laying on the floor. He just cannot get settled, his body is always in movement, but the pain makes it fast and aggressive. It's horrible to watch! He was fussy, and nothing would make him happy. He had a very hard time eating, and sleeping.

He kept pulling his right knee up and he didn't want to lay on his tummy. Then we knew something was probably bothering his Stoma (the site where his G-tube goes in his stomach). I had the medicine to help him at home, but because I couldn't see anything at the site, I didn't think it was that.

DUH! Now I know...if he acts like that again, just give him the medicine! I felt like a horrible mother for not helping him sooner. We went to the doctor again on Monday, and when they pulled back his gauze around his stoma there was pus! Hello! Why couldn't that have shown up on Sunday! Sheesh!

So, they cultured it, told me what to start putting on it. He was better by Monday evening, and slept through the night ever since! Poor baby! :(

We have four doctor appointments scheduled this month. With two more being added!

We saw a Physiatrist last Wednesday. He's recommending Botox in jections in Eli's aductor muscles in his inner thighs. To relax thos muscles so maybe sitting, and being in his carseat might not be so hard. Also, diaper changes might be easier, too! Hey, that would be great!

Thursday, we went to Seattle and saw a Pulmonologist. He upped Eli's Prevacid, because he thinks his Reflux is causing his congestion when he eats. He gave us a prescription for Reglan, too, but we aren't going to try it yet. We want to see if upping his Prevacid helps first. This Dr. recommended we see an Otolaryngologist (ENT) so we can get a Bronchoscopy. They want to look into Eli's airway and see if what is going on in there....as we are trying to figure out why he goes into Respiratory Distress.

A RARE calm moment in his carseat...on the way home from Seattle. :) Look at his hands!!!

I'll keep you posted regarding all the stuff we find out at our future appointments....

Abraham Lincoln Quote

"Congressmen who willfully take actions during wartime that damages morale and undermines the military are saboteurs and should be arrested, quickly tried and hanged!" ~Abraham Lincoln

First Day of Pre-School!

Today was Eli's first day of special ed pre-school! He's not really attending the whole class...we decided to start out slowly. He'll be going for his 1/2 hr of scheduled OT (occupational therapy) on Thursday's at 10 am. After OT, we'll go into the classroom for him to watch the other kids, and let them get to know him, too. There are only four boys in his class right now! :)

ON OUR WAY TO SCHOOL

THE CLASSROOM

PLAYING WITH FROGGY IN OT

ON OUR WAY HOME...

HOME! WE DID IT!

This is why I posted pics of Eli at birth yesterday.....to show how far he's come!

I find Wordless Wednesdays hard - because I like to talk...LOL...and I don't get to comment!

Wordless Wednesday

What Does a Non-Drinker Do with a Wine Rack?

She makes it into a Media Center!!!!!

When we bought new furniture there was this Buffet/Wine Rack and a tall Curio Cabinet.

Both won't fit in my dining room.

I chose to put this piece in my living room...right by the dining room. So, it makes more sense to use for magazines anyway.....I wouldn't want to sit on the couch looking at wine bottles.

Now if it was full of Kahlua bottles................... hmmmmm.......... :)

Wordless Wednesday

The Simple Woman

Visit: http://thesimplewoman.blogspot.com/ to learn more about posting a "For Today" list on your blog...

FOR TODAY Monday, September 8th...

Outside My Window...lots of cats...
I am thinking...it was a good day. I went to MOPS and then went shopping.
I am thankful for... our new house. I'm having fun decorating.
From the kitchen... not much today....too busy.
I am wearing... my pj's.
I am creating....scrapbook LO's in my head...until I can sit down and create for real...
I am going... to bed in an hour...after I plug Eli in for the night...I can't wait to get some rest.
I am reading... Scrapbooks, Etc magazine as i find a few minutes here and there in the day.
I am hoping... that we can get our hot wire up on our fence soon so the dogs don't keep getting out.
I am hearing... Eli moaning on the baby monitor. He's so precious when he talks in his sleep.
Around the house... Lon just got done paying bills and balancing the check book, I'm having some fun on the computer, and getting ready to go outside and figure out why I am smelling smoke.
One of my favorite things... bedtime!
A Few Plans For The Rest Of The Week: A friend is giving Eli a hand me down adaptive stroller tomorrow, we have a playdate with friends on Wednesday, and Eli has swim therapy on Friday.
Here is picture thought I am sharing...my precious cat Piper.

Phoney Boloney

This is Eli in swim therapy today. Watch his face closely!

It looks like he's really upset...but when the cry stops as quickly as it starts......I call him a phoney boloney! LOL!