The Greatest Helper

Our nephew Daniel came with us to Beaver this past weekend. He was wonderful!
He not only helped plant over 60 trees, but he helped out with Matthew. We would love to have Daniel with us for every trip!

After a long day

The boys were quite tired after working so hard planting all those trees!!
We sat by the wood burning stove in the barn for a nice relaxing evening.

You'll notice an adorable white lab sleeping under our camper. This is Amy, our neighbors dog in Beaver. She always spends the weekend with us... and plays with Quixa. She's a stowaway dog... she sneaks under the camper and sleeps on the white roll of insulation thinking we don't know she's there... actually, one night... we didn't know until the next morning. We all love her.

The Drive Home

These pictures speak a thousand words.
The only one who doesn't get to sleep is poor Mike. Amy uses the seat belt as a "hammock" ~ she gets quite comfy. The only thing we don't enjoy about our drive to and from Beaver is the gas Quixa passes.

Uh, not much help from the G.I. doctor

The G.I. doctor was of no help whatsoever. He is not my favorite person right now.

I called his office around 9:30am and gave a detailed message. His office called me at 2:00ish to say that doc was not in office today (he was at the hospital) ... and I explained again about Matthew's gagging & retching (no fever.) Then around 3:45pm an office person called to tell me to call Matthew's pediatrician (huh?), a doctor that knows nothing of any of this. Dr. Baron is the doctor that has been following the retching and called for all of the G.I. testing ... not his pediatrician. Matthew has so many doctors ~ it's so frustrating. I obviously called the G.I. doctor because this is the kind of thing a G.I. doctor takes care of ~ Dr. Baron has known of Matthew's retching for at least 6 weeks and has taken over his care (he has a huge file on Matthew.)

Then, the office person said I should call the doctor that prescribed an antibiotic Matthew is taking (which was his pulmonologist ... who will NOT be able to help me with his retching problem.) I called Dr. Baron's office back explaining that I didn't know if it was the antibiotic causing this retching ... or if it was the change in nutrition formula. Heck, maybe he just had the flu, I don't know.

Well ... long frustrating story shorter ...

I didn't call our pediatrician that can't help us with this ~ he would most likely just refer us back to Dr. Baron! ... I did try calling the pulmonologist, but hung up after waiting on hold. I love our pulmonologist, it's not his fault. I didn't want to pester him with this problem anyway.

Mike and I had a pow wow....

we decided that we will continue his antibiotics for the last couple days ... and discontinue the new formula and go back to the older formula. We will figure it out ourselves I guess. We're not going to doctor hop all over this town.

It appears the G.I. specialists don't want to be bothered with this retching problem.
This reminds me of the previous G.I. doctor we had that didn't listen to us.

Not so good weekend for Matthew :-(

This was a tough weekend for Matthew ... (and me) I hate to say.


Starting on Friday while driving to Beaver, he started gagging and retching all over again.

It was like this all weekend long ~ he simply acts like he feels miserable. We checked his SAT's and he did not/does not have a fever. Funny thing, we were just at the G.I. doc on Thursday!! ... so, go figure. He's retching just like he had in the past.... it's like he's not taking this new drug at all. Very very frustrating and disappointing. He's quite whiney and cries a lot.

I am waiting for 9 o'clock to get here so I can put a call in to Dr. Baron.
Matthew has not poo'd for a couple days We have read thru a couple of the papers that they give you w/ your prescription... all of the drugs he is taking can cause all kinds of unpleasant side effects. We're not sure if it's the new antibiotic he's on.....I sure wish he could talk.

I'm sure Mike will update the blog w/ some cute pics we took. He and Daniel planted 60 trees on the property.

GI Doctor Update

We took Matthew to his G.I. doctor today. He's not gaining as much weight as he should, so we will be feeding him four cans of Nutren with fiber per day. We are going to decrease his night feeds a bit and try to increase the volume per feed (to stretch that tummy). We currently feed him no more than 4 oz a feed. That will be increased 5 oz a feed. If that goes well and he doesn't retch, in a couple months we can increase the volume again. Dr. Baron suggested that we put Matthew in his high chair before each feed and let him play with food. He thinks that since his retching has subsided, he may have a better feeling about eating. For the past 17 months, eating has been quite miserable due to the retching. It will still take time since he has a strong aversion to anything with a taste.

Dr. Baron is also referring us to a wonderful speech/feeding specialist to give Matthew one-on-one interaction. We will most likely start this in April after RSV season has passed.

A Beneficial Side Effect

In a fleeting moment, we managed to obtain this documented proof that Matthew can drink from a bottle. Unfortunately, the only time he is willing to do this is when he is on a regimen of steroids (for his lungs). This bout of normalcy usually fades as the steroids leave his little body. This time around the steroids did not stop his wheezing. Therefore, Dr. Nakamura prescribed antibiotics to prevent a possible sinus infection. These high doses of antibiotics kill the good bacteria along with the bad. So now the challenge is to figure out a way to get some yogurt into a 2 year old Irish bloke who refuses to eat solids.

One Year Anniversary

It was one year ago today that Matthew had his second open heart surgery up at LPCH @ Stanford.

He did much better after this surgery ... we were in and out of hospital in 8 days.

Here is a pic of Matthew's pediatric heart surgeon Dr. Frank Hanley and I after his surgery.

It's been a great year of no more oxygen 24/7!! After this surgery, he came off a lot of his meds, too.

Trip to Beaver

This weekend we went up to Beaver, UT with Grandma & Grandpa Wright. It was still quite cold up there so Matthew spent the whole weekend in the motorhome. As you can see by the photos, he still climbed every mountain and interacted with the wildlife!

Quick update until Mike gets some pics up

We've been up in Beaver, Utah w/ my parents for the past three days.

We have some adorable pictures of Matthew in the motorhome and will get those up as soon as possible.

Matthew is doing just fine ... but still has that weird "lung issue." It's been 8 days and there is no change.
He coughs a lot, sounds rattly and has a runny & stuffy nose ~ but he doesn't have a fever and doesn't act sick. His saturation levels are still great, around 96, 97. I'd be worried if his SAT's were low.

Today will be his first day off the steroids so we'll see how that goes. I think I'll keep him on the Musinex though. I put a call into the pulmonologist yesterday.

Men at Work

Matthew loves to help us do our crunches. We growl at each other like lions when we come face-to-face.

Shameless Jealousy

Of course Quixa can't stand to have less interaction than Matthew.

Bedtime Stories

Matthew routinely selects a book for us to read to him. He walks over, hands the book to us, then climbs into our lap. How can you say no to that?

Back on steroids again... oy vey!

Yes, Matthew must have picked up some kind of "lung bug" while at the doctors office on Friday while getting his RSV shot. I never leave this house so I have no idea where else he could have picked it up... Not blaming doctor office, it's just hard to sit w/ a 21 month old in the room without letting him down to investigate. He's been coughing like crazy since Sunday night. It scares me because the last time he was coughing like this, he ended up at the hospital for a week.

So... he's BACK ON STEROIDS.... and having additional breathing treatments.

Thank goodness for our beloved Dr. Craig Nakamura, he was so busy but still squeezed me in. Needless to say, I was at his office from 4:00pm until 6:15pm.... God bless him, he's one of my most favorite doctors and he still had to go make rounds at several hospitals after seeing us. This is a doc that shows up at your hospital room around midnight or 1:00am ....very dedicated and devoted doctor.

GAHHHH....It's soooo hard to entertain a little tyke like Matthew for 2 hours at a doctors office.

For Those About to Rock!

Last night Matthew walked over to the receiver and changed the sound from our movie to the radio. The local Rock N Roll station came on and he cranked the volume. Then he started to dance & grunt! Terri had to take these photos because I was laughing too hard.

The Little Rocker!

Once Matthew decided on the radio station, he grabbed his drum sticks and began to boogie.

The Emerging Escape Artist

The other day Matthew walked over to the door with some keys and did his best to make his escape.

The Little Dreamer

Can't you just hear "Dream Weaver" in the background?

Grandma's Visit

When the doorbell rings it is usually Grandma Wright coming over for a visit. Matthew gets so excited! He makes several gleeful little squeaks as she walks through the door. After that, it's down to the business of play.

Happy National Reading Week!

I volunteered to read to 1st & 2nd graders in uniform today for National Reading Week. Since it's a rarity that I'm in uniform, Terri wouldn't let me out of the house without a picture first.

Complete Concentration...

A fellow blogger has commented that Baby Einstein is like "crack to babies". With Matthew it is no different. When the DVD goes in he begins to squeal!. Look how the colors, shapes, and puppets mesmerize him.

The Tissue

Terri captured these pictures of Matthew walking around the house holding this tissue to his face. I'm sure he has seen us blowing our noses and felt it only proper to be prepared. He looks like he has just watched an emotional climax to some romantic movie (I often wonder what goes on around here while I'm gone).

KUDDO'S TO CASEY!

Casey called us today with some wonderful news!

The bank has accepted an offer ~ and he has qualified
for his very first home here in Las Vegas... well, actually Henderson.

If all goes well, he will officially be a homeowner on March 30th.

He deserves this so much, he has worked so hard! He started working when he was 15 years old.
While attending college, he worked a full time job. He graduated from UNLV last December with a degree in Criminal Justice.

He has been a "saver" his whole life and is very responsible with his money.

All of his hard work and dedication has paid off and now my first baby will be a homeowner!!

I am so proud of him.