Wednesday, October 29, 2008

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...


Monday, October 27, 2008

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 he didn't have to spend too much time in this 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!

Sunday, October 26, 2008

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.

Wednesday, October 22, 2008

Wordless Wednesday - Eli's Masterpiece

Sunday, October 19, 2008

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 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!

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

Monday, October 13, 2008


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 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....