Quick update

Matthew is doing great ... now.... He was pretty sick a couple weeks ago up in Beaver. He was put back on Oxygen 24/7... but that only lasted a couple days... then he was on 02 only at night... now he's off...they think he was just starting to get pneumonia again in that left lung. He was given 2 Rocephine shots and that seemed to take care of it. His SATS were only 84 -85 for a couple days... yikes.

Needless to say, we are taking him in tomorrow for the H1N1 vaccine tomorrow.
We are also back to being "bubble boy" for the winters. Won't be taking him out into the public at all.... or other kids. Swine seems to be everywhere...even in Beaver school.

Hoping for a better winter than we had this summer!! I don't know!!

Matthew had pneumonia again *sigh*

He started getting strange fevers again... only a couple days after ending his 10 days of antibiotics.

We were on our way to Beaver, but when we got by the speedway~ I had Mike bring me home.

Good thing, turned out he had pneumonia in that same lung and tonsillitis. He got another Rocephine shot and is now on another 10 day supply of antibiotics.

He is much much better. Sorry I neglected the blog, I have been posting on Facebook lately!

Plumb tuckered out~had been a long day for Magoo

Spent 3 hours in the ER last night ~ fun fun

Took Matthew to a few places to get his blood drawn last night ..... ended up going clear across town to the "best stickers" at Quest. The first place I went could not get blood.

His blood tests were labeled "STAT" so we got right in and right out! By the time I got home at 8:30 pm, got a call from Dr. Tenby stating that I needed to take him to ER for antibiotic shot ... he thinks Matty may have a bacterial infection .... but, we will know more about what it is after the blood cultures in a day or two..
so...

An X ray was taken of his little lungs and it showed he has a bit of pneumonia. We are shocked. We didn't see any signs of that.

Needless to say, it was a long evening ~ got home at 12:30 am.

More later... off to see Dr. Tenby.

A couple pics from the past couple days

Waiting to be released on Tuesday.

Just waiting to go home. This is Cody, a therapy dog.

Home sweet home in mom and dad's bed.

On our way home from hospital.

Matthew is still not feeling so good, definitely needs the oxygen. Getting lots of meds and breathing treatments. We go see Dr. Tenby and Dr. Nakamura tomorrow.

When I have more time, I will post some awesome birthday pictures of Matthew's birthday party up in Beaver. We had a Blue's Clue's cake and Mike had an awesome "hunting" cake.

ECHO & EKG went great today

He used to scream bloody murder during the EKG.. but he was as calm as a clam.

He was so calm and relaxed, that he actually started to doze off!!

We love Dr. Mayman! He's such fun and a great doctor w/ the best bedside manor.

His "numbers" are great! They are holding steady ~ his "numbers" are the same as they were three years ago after his second heart surgery. We are very happy and excited!

Two doctor appointments this morning.

Our first appointment was with Dr. Mayman. Unfortunately, we didn't get to visit and talk politics b/c he got tied up this morning and he was an hour late. This was the very first time in over 3 years we didn't get in on time. It did make us late to our GI appointment, but his office called Dr. Baron to let him know we were on our way. Wasn't that nice! I have to say too, today is his admin day... and he squeezed us in early so that Mike didn't have to miss a trip to Beaver.
That's only one reason why we love this guy so much. He's very special to us all.

We didn't get "his numbers" yet because we were rushing out... but we will know soon. Dr. Mayman said so far it looks pretty good. 6:00PM Just in from Dr. Mayman, "The numbers on Matthew's echo were great!!!!"

So, by the time we got over to Dr. Baron's, Matthew was in a VERY foul mood. He was sure to let everyone in the office know... for about a half an hour or so. That's always real fun.

He's very sleepy because he had been up since 2:30 AM ~ yep, 2:30 AM.
Now the tears... along with the whining and crying.
He's goin down.
Down....
OUT.... he is fast asleep during his doctor visit. Ah... some peace and quiet. It made it quite easy for Dr. Baron to do his thing.

He's doing good.

We get to add another cc to his mic key button to help keep it from ripping out. Hopefully it works... we'll try 6cc's if the 5cc's doesn't work first.

We think he had a headache b/c he was so miserable. About an hour after I gave him some baby ibuprofen, he was settled down and back to his sweet little self.

I was sooo thankful Mike was able to come with me today... I couldn't imagine going alone with him being so grumpy and fussy.

It's tough for Mike, these early morning visits because he doesn't get home til around 1:30 or 2:00 AM on a good night.

We like to snag those first appointments ... usually you're pretty much on time.

Tis the season...

Not surprising ... but Magoo picked up some kind of "bug" at the doctors office or the diagnostic center this past week. He is sick with cold like symptoms. It never fails when he is healthy and we have to take him in for a well check up... he gets a bug. It is October ... so there ya go.

He is junky in the lungs, coughing, runny nose....GRUMPY... not eating much again...retching after his feeds and not sleeping well. ~ all that fun stuff. Did I mention that he is quite whiney???

No fever thank goodness.

Anyway... I am back to giving him chest compressions 4 to 6 times a day, percussion several times a day, baby Ibuprofen, and additional breathing treatments. Luckily he loves his breathing treatments, isn't that funny! Actually, he enjoys the chest compressions too!!

I want to give a thanks to my brother in law, Mitch who is a family doctor... he is the one who taught us the chest compressions last year and saved Magoo from having to be put on Prednisone.

He does seem to be handling this much better than last year though. He is at least coughing it up. I can't get him to blow his nose, though. It would be great if I could get him to do that!!

He was very happy yesterday to see his "Dwammma" and his "Auntie Tim"...
those were the two times yesterday he was in a good mood. Auntie Kim did get him a soft serve from Dairy Queen and he did have several bites of that!

Maybe I should ship him over to their houses for the rest of the week... what an idea!! *giggle*

Yes, and Magoo gave Mike his litte cold, too.

No more kidney reflux!! Wahhhh hoooo!!

Daddy getting Matthew ready for the very uncomfortable VCUG test.

Not so sure about this...... Isn't he just so sweet! Notice no pink this time... the hospitals now have blue and green garb.... usually he is in pink!

Having some fun putting his sunglasses on Daddy.

Passing the time by reading a Leap Frog book.
Actually, the hardest part is all over.... we are just waiting for Dr. Johnson to come in and check out his very full bladder. This is such a yukky test for him... and US, too! We are thrilled to tell you that there is no more kidney reflux!!!!!!!!!!!!!!!!!! He shouldn't ever have to do this test again.

Dr. Johnson was sooo nice... he actually looked just like Kevin Bacon!! I could hear "Footloose" playing in my head during the test. No, not really, but he sure looked like KB!! Poor little Matthew... he just wanted to get out of there. We were all happy it was over. The staff over at Sunrise Diagnostic was wonderful... Dr. J, Bruce and Angel. *sidebar: my arms really aren't that huge, this camera added 10 pounds to them.. snort!* He was just "spent" ~ came home and took a two hour nappie.

A one cheek peek.... he's saying, "Let's GO!"

Three and a half years of taking Septra, he's done. One more step to being more healthy.

Doctor month for Magoo

Here we are at Dr. Nakamura's office, Matthew was getting is oxygen SAT level checked. For some crazy reason, he doesn't like it. All they do is wrap a dealie around his toe, but he panics. His nurse Cynthia was telling funny stories. Yes, Mike checked w/ Matthew before we left the house to be sure they dressed alike ~ Mike loves to dress in the same colors as Matthew.

October is a busy doctor month for us. We just took him to our good buddy Dr. Michael Tenby for his pediatrician visit. Dr. Tenby now has his very own brand new office in Northwest Las Vegas. You can't ask for a better pediatrician..... I'm serious.

All was good. He does want us to take Magoo to Lili Claire
for some testing. They specialize with children that are on the autism spectrum, having speech problems and that have neurological issues. Now THAT, I'm having a difficult time with so I won't get into it. I am praying he is not on the spectrum and he's just behind due to health issues.
We saw Dr. Craig Nakamura yesterday ... he is Matthew's awesome and adorable pulmonologist.
We all got our flu shots there. It was hysterical, Matthew was fine for the shot (in his arm for the first time) but he freaked out over the band aid being put on! Dr. Craig told Mike and I that he didn't want to hear us crying after our shots. We actually love going to Dr. Nakamura's, all of his office staff is so wonderful to us. We love those people ~ they are extra special.

We take him to Sunrise Diagnostic Center on Tuesday for that nasty ole kidney reflux test.
I hate it, they put him in a straight jacket type deal and tie him to a board... put a tubie up his peenie and fill up his bladder. They tilt him back and forth and they watch on a monitor to see if his bladder backs up to his kidneys. Both sides used to back up.. but two years ago when we did this test, the left side had repaired itself. Hopefully the right side is fixed and we can quit giving him a daily dose of Septra.

At the end of the month we take him to Dr. Baron, the GI doc for a regular check up ... we started giving him a drug that increases his appetite... hoping he'll eat more by mouth and gain some weight.
It seems to be helping.

THEN we see our beloved Dr. Mayman for his 6th month ECHO. As you all know, I get very nervous ... I hope that his little leak is still little and there is NO sludge build up on that valve.
Keep your fingers crossed.

He has a school district special ed teacher come to the house two times a week and a speech therapist once a week. OT comes once a month. I feel that Nevada has really great people that work with Matthew. We were lucky w/ Nevada Early Intervention and now the school district.
I certainly can't complain. Some people complain about state agencies, and I think it's crazy.
We have always had wonderful caring case workers... starting with the Katie Beckett program.

Besides all that... Magoo is quite mischievous and we love it. He is talking more and it's so fun.

One thing that has been happening more frequently, his mic key button comes out!

He is so busy scootching off the couch or floor ... and his mic key button rips out...

Good thing we feed him every 2 to 3 hours ... otherwise we'd be at the ER having a radiologist put the thing back in. We have a short window to put it back in ourselves w/ some KY jelly.

It's always quite shocking to find his mic key laying on the floor fully inflated ... or to pick him up and find it missing !!!!

Fun fun.

Can you believe it!!!

Matthew will be 3 this Saturday!!

We will be having a small family get together ~ Mike has to work that day, so we figured it would be easier this time around to keep it small.

We will also be celebrating Mike's birthday and Mother's Day :-)

Matthew's Grandma Sue is flying down from California to spend a few days with us.

We will be sure to post some pictures. He got a haircut the other day, and he always seem to look so much older after a haircut.

ECHO results

Dr. Mayman figuring out Matthew's leak "numbers". It's rated a 2 now ~ which is kind of crazy because during his last ECHO it was a 3 and the time before that was a 4.
So, we got great news today!
(Sidebar: Once it gets to an 8 we need to talk about surgery and a 10 means surgery time.)

Waiting for the ECHO.
Strapped up "halter monitor"... it's a little EKG machine he needs to wear for 24 continuous hours. He has little stickies all over his chest. This should be interesting!

Getting ready to listen to his own heart at Dr. Nakamura's. Dr. Craig gave him his own kiddie stethoscope.

Matthew's ECHO results could not have been better!!

Dr. Mayman said that it could be anywhere from 5 to 10 years before his next surgery! WAH HOO!!

News Flash!!!!

Out of the clear blue ... Matthew started singing ...

"twinko ... twinko ... litto ... tar!!" I almost passed out *big eyes* ... but first, I had to acknowledge that I knew what he was singing .... so I started singing it with him again. (He's never even SAID twinkle, little or star.)

I raced to the phone to call Mike ... he was able to hear him two more times...

Wow.. I am in shock.... it was SOOOO great!!!!!!!!!!!!!!!!!!!!!!!

I of course had to call his speech/feeding therapist Shay, to let her know .... she's a big part of why he's doing so well. Actually, all the girls from Nevada Early Intervention are the greatest and have worked wonders w/ Magoo .... Christy and Erin, too. We love them all. Kristina and Shirley have been a part of Matthew's care too, but are no longer his little helpers ~ thankfully we stay in touch. His services will end on his birthday, we will be so sad... these girls have been such a huge help to me and Matthew over the past 2 1/2 years.

*DEEP BREATH*

okay, enjoy the pics I posted below.....

Ethan and Matthew painting w/ cool whip. Ethan loved eating it.. Matthew wanted no part of tasting it.. shocker! This is Erin of NEIS at the table, she and Christy were the "play masters".

I know it's kind of dark, but it's so cute. If you look to the left, you can see Matthew's back in the striped shirt.. trying to make a getaway. You can see our friend Trish at the table.

Wearing daddy's baseball cap.

Just checking out how it looks in the mirror. His t~shirt is so cute, it says, "That's it, I'm going to Grandma's". His Grandma Sue got it for him.

All is fine around here. I know we've been lame about keep up the blog.

We had a fun little playgroup yesterday w/ the Nevada Early Intervention Team and little Ethan, he's almost 3. We're getting Matthew used to being around other kids ~ healthy kids of course.
This was our third playgroup and it was quite fun and funny! Trish is wonderful for driving clear across town so Matthew can play with him during these supervised visits.

We'll go see Dr. Mayman (pediatric cardiologist) next Friday for his six month ECHO. As always, I get SO NERVOUS about those visits.

We also go see Dr. Nakamura next Thursday for a check up on the ole lungs.

Casey will be having ANOTHER ablation (cath) surgery on his heart on the 18th, not sure what time though. Hopefully he'll have better luck w/ no IV fluid dripping on the equipment cables.

Off to Beaver for a few days! We're excited about going, Matthew and I haven't been up in two months. Mom and LeRoy are going up w/ the motorhome tomorrow. It's always a good time in Beaver.

Quick update

Matthew is beginning to feel better. His retching is under control now, too. That was a real problem this time around. He retched non stop for a couple weeks and it was quite miserable for him. (us, too... that is never fun to watch)

He had a great day today. Still a little junky in the lungs, but we are working on that by extra inhaler treatments that contain steroids, percussion treatments and manual chest manipulations. He loves the chest manipulations, he just lays there and let me do my thing. He usually starts giggling. We are doing everything possible to avoid that dreaded Prednisone. We avoid that like the plague.

It's been nice to see him smile and be happy again.
That makes me happier, too.

It's been a tough month, that's for sure. These little guys w/ lung issues really take this kind of thing hard. It's a reminder how fragile he really is. He's not like a normal kid when they get a sniffle. For us, there is no such thing as a "simple cold".

Matthew checking out his heart w/ the stethoscope

We saw our wonderful pediatrician yesterday, Dr. Michael Tenby.
Dr. Tenby gave Matthew a 6 month check up and he received his last vaccine until he's five. He does need to go in for testing to see if his kidney reflux is healed. We will do that after RSV season. I am not looking forward to the VCUG test... poor little guy.

We have one more doctor appointment tomorrow with Dr. Baron, the G.I. doc and then we're done for a while. Thank goodness.

I absolutely dread taking Matthew to any doctor office during RSV season. It's very hard to keep a "twonager" sitting in one place ... I simply won't let him touch a thing. Of course, you can never get out of a doctor office in less than an hour.
I got lucky and his early intervention feeding counselor is going to meet me at the doctor office.....she'd like to discuss Matthew's feeding issues w/ the doc. Matthew is back to not "eating" again; ever since he got sick about a month ago ... he's been retching, too. It's all very strange. Something happens after he takes an antibiotic.

Well, here is the best part of the post!!!!

Is it here??
No, maybe it's here.

Oh yeah.. here too.

Okay.. sounds good.

I understand that it sounds like a muffled washing machine.