Thursday, October 30, 2008

We love our mailman, Terry

This is Terry, our favorite mailman.. he's been so wonderful to us over the years. He really cares for Matthew ... and look what he brought to him a couple weeks ago!!

His very own USPS mail truck!!
He loves playing with the little door on the side that slides open. Thank you Uncle Terry!!!

I've been trying to spoil Terry lately with some home baked cookies ... soon it'll be cool enough for me to leave in the mailbox... but for now I must leave him notes so he can come to the door for his bag of goodies. I felt goofy yesterday b/c I was all grungy looking ... like a "momster".
I might have scared him! Oh wait... that's supposed to be saved for Halloween!!

Wednesday, October 29, 2008

Speech and OT therapists from the school district

*giggling* Isn't this funny! Matty getting a little ride in Miss Dorina's rolling cart! Miss Dorina is his speech therapist from the Clark County School District. She is wonderful, we love her.
Miss Dorina is trying to get the little guy to ASK for a ride instead of grunting and whining for a ride.
This is Miss Lisa from the school district, she is his occupational therapist. We love her, too.
She had soo many ideas for us to help him. Brought him some goodies to help w/ his fine motor skills w/ his hands and fingers. We sure love this play table his "Dwamma" bought him last year. We use it every day.

Here is a little peanut ball... since he's so active.. he can sit and work and bounce all at the same time.
Honestly... we have always been blessed to have the most wonderful case workers from the state ... from the Nevada Early Intervention girls to the school district.

We are ever so thankful to them all!! Oh, and the transition team ... they helped switch us from NEIS to CCSD was just as wonderful!!
He has a special education teacher, Miss Heidi that he loves as well. I promise to get some pics of her this week. They are all so patient and loving to our little man.

That means the world to us.

Thursday, October 23, 2008

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.
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.

Tuesday, October 21, 2008

What is a mic key mom & dad to do???

Well, well, well... what do we have here??? Oh yes, this is Matthew's little mic key button! :-/

This is becoming a daily occurrence these days. *smirk* I thought he was napping on my bed ... but he had actually slid off my bed, on his tummy and ripped out his mic key. As I walk in the room, I can smell it immediately and his shirt and shorts are sopping wet. I had fed him a little bit earlier.
Uh, ya... this is real fun... it smells rotten and it's all over Matthew and the carpet. I clean Matthew all up, then I deflate the balloon on the mic key ... slather it w/ KY and put it back in. He was being quite difficult today... tightening up his tummy... fighting me .... and I have this goey slimey mic key in my hand trying to put it back in. With one hand mind you. *l0l* I had the hardest time w/o Mikey here. You only have a small window (about an hour or two) to get these things back in or you go to the ER for a radiologist to put back in, since it's going thru his stomach wall. The dreaded ER!! YUK!! Luckily for us... we feed him every 2 to 3 hours... so chances of that are pretty slim.

So, I go grab a tube of handy dandy KY jelly... a couple syringes. I keep this with me at all times... it's in my diaper bag, up in Beaver in our trailer and my parents motorhome and at the Baxters. I save all my old mic keys for emergencies since our insurance only pays for one every three months. I like to keep them "just in case". They are quite pricey. We've had several spring leaks and they just fall out.
I started using an Ace bandage ... I have the self sticking kind and the kind w/ the clips. It helps "some"... but the mic key has still come out with this wrapped around him, like a girdle. It's the best we can do ...unless there is something else!! Who knows what else there could possible be!

He freaks out over the little clips... don't know why, I've never hurt him w/ the clips ... the big goof ball... anyway... I keep them in my mouth until it's time to attach to the back.
*big sigh*
The life and times of mic key parents. This is part of why we can't leave him with "just anyone"... only family that has been trained... and our Tanji girl in Beaver.
After all the fun, I rewarded myself w/ a bunch of cookies I shouldn't have eaten. DOH!
My "heart mom" friend Kathy, Isaac's mommy is having the same kind of issues. Sure glad we have each other .... we can all relate.

Sunday, October 19, 2008

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.

Tuesday, October 14, 2008

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.

Saturday, October 11, 2008

Want some more!!

While I was up in Beaver last weekend we picked up DQ ice cream for the kids. Terri kept giving Matthew little bites of the soft swirl and he really liked it!! He'd smile at her and say, "want some more?"

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.

Friday, October 10, 2008

Snug as a bug in a rug!!!!!

Isn't this the most darling picture!!!!!!!!!!!!!! They are like brothers and sisters.
Troy, Taylor and Magoo. These kids are so good w/ Matthew. I am so lucky.