Sunday, January 31, 2010

We are good

All four boys healthy. Some with snotty noses, but healthy.
All four sleeping all night, all with food in their belly.
My heart, and mind have been on Emma and her family.
Her momma.
I could talk about the stress of four boys,
the stress of tube feeding,
the stress of my life,
but we are good,
and Im thinking about Emma.

Wednesday, January 20, 2010

Thats just the way it is.....

I just ate an entire bag of mini marsh mellows while surrounded by Alex's throw up, and towels. No, hes not sick, I gave him a marsh mellow and that time he couldnt handle the texture, so he threw it all up, the two cubes of fruit and half a nutrigrain bar it took me 15 minutes to feed him. I just cleaned him up and put him to bed, I couldn't stand to start all over. It was the second time he did that today, Im tired.
Right now I hate RTS, I hate that he was NPO, and I hate that I cant drive 45 minutes to see our SLP right now.
Thats just the way it is.

Sunday, January 17, 2010

Get your chocolate fix here!!!!!

Who likes chocolate?
I knew you did!
So this is what you need to do, order some chocolate from my great, long life friend Erin, and 100%, that's right, 100% of the profits will go to Special Friends Foundation.

Whats Special Friends you ask?
Special friends is a foundation that helps families touched with Rubinstein Taybi Syndrome by financially helping them with ASL teaching, and other communication teaching strategies, helping with RTS conferences, or reunions. They even offered to help us pay for Alex's Peptamin jr when we thought we would have to foot the bill. 24 8oz cans cost 300 big ones! Alex goes through 2 cans a day. Special Friends lightens the load for families that have the honor of loving and caring for someone with RTS. You can be a part of this lightening of the load, and all you have to do is eat chocolate!

All you have to do is click on this website, .
and then email Erin at with your order.

Order through the end of January and 100% of all profit will go to Special Friends.

DOVE Chocolate Discoveries(TM) Chocolatier

Saturday, January 16, 2010

Any given day, at any given time......

Because we are a house full of boys, and laundry........
You will find socks in random, odd places in our house.

*blurry pics=cell phone camera

Friday, January 15, 2010

One of those feeding posts....

Alex has made leaps and bounds when it comes to eating, its just really, really slow. In July when we were in Colorado, it took him all day to eat an entire nutrigrain bar because the process of chewing and swallowing food that wasn't pureed was hard. Now he can eat the entire bar in 5 minutes, but he still cant handle foods that don't melt in his mouth without a little gag or cough when it goes down. Still we are pushing him, and moving forward ever so slowly. A while back I decided to give Alex a mini marsh mellow, and I gave it to him on the floor because history has shown us that we throw food we touch in the highchair, and eat food off the floor. So I placed the billowy goodness on the floor, and he partook, and again, and again. He loves marsh mellows, it was in fact the only food he would gladly put into his mouth, without smashing or throwing. He will not feed himself cereal, nutrigrain bar, nothing but the marsh mellow. Until one day......

he spied one of his brothers Reece's peanut butter cups on the table. I watched him as he curiously eyed the chocolate goodness, wondering what he would do, I unwrapped it and cut it in half, and left him to his own devices.......

He indulged......

and he liked! In total he ate 3 Reece's peanut butter cups. He chewed, he fed himself, I was so excited!!!!! (look at that lip closer!)

Until his ears grew bright red, he started to itch his tummy, his ears started to swell, big red splotches, otherwise known as hives started around his mouth, descending down his trunk, and even onto his legs. I gave him benadryl, still however in denial, I called his nutritionist hoping what I already knew was just paranoia filling my head.
Alex is in fact allergic to peanut butter. Why not, we needed there to be another obstacle thrown into out feeding journey. Its what makes it so much fun.
So props to you buddy, your doing well.

We are proud of you....Sorry about the peanut butter.

*blurry pictures=cell phone camera
*fuzzy hair=my dry house is as a Van der graf
*(italic) = sarcasm

Thursday, January 14, 2010

Is he thirsty?

Alex has been up twice now, its 3:17 a.m. Is he thirsty? When my older boys get up in the middle of the night they want a drink. Do I really unzip his pj's hook in his tube, and give him water? I rubbed his back, and he went back to sleep the first time, it was sweet, I almost liked it. Did he have a bad dream? Unlikely, hes been up twice. Something hurt sweetie? Oh that's right, you cant tell me. Oh great! Sleep apnea, should I call the ENT for a sleep study? Are there many sleepless nights in our future? So much to do today, should I get started? I don't feel sleepy right now, but come 2:00 p.m. I could do laundry, it never stops. There he is again. Is he thirsty?

Wednesday, January 13, 2010

4 months already?!?!?

I cant believe this boy is 4 months old! 4 months to me is like the end of newborn baby, the beginning of big baby stuff, eating, sleeping, cooing, playing. I cant wait to see what is to come, but I am enjoying what is. Max is sleeping through the night, goes to sleep sometime between 10 and 12 and sleeps until 10 the next morning. He is happy, loves to squeal, and is laughing a little more. Just talk to him, and he will flash you his most handsome smile! If he cries, he is either, hungry, tired, might need to poop, or just wants to be held. Never hard to get him to calm down, such a sweet baby.

Thursday, January 7, 2010


They don't go unnoticed in this house. I see everything, facial regard, hand grasp, neck and trunk strength. Nothing goes unnoticed, I don't take one little milestone for granted. Passing all his milestones on time doesn't make max better than Alex, it just doesn't go unnoticed.

All four boys hit milestones at different times, some very early, and very late. All accomplishing their best, none left unnoticed!

Sunday, January 3, 2010

Have I kept you waiting long enough?????

Had it been Alex's NICU records the stack would have been about 5 times as big, not insurance papers , and thank God its not bills!
Its over 200 signed pledges to never use the word retarded in a negative way!!! So to the 200+ students at Turner Jr. High, THANK YOU! Every time you correct yourself, or correct others language, you have Alex's back. You have your peers with special needs back, you have your sibling with special needs back! Thank you, you are changing the world! I went through every single pledge, and every letter, and it was the best gift I got this year. Knowing that each of you in each different direction of life that you will go, have my boys back, and will be changing the world, making it a better place for those differently abled people to live in.

Thank you for having this boys back!

These kids have been following Alex since they started studying genetics in my fathers science class, they weren't forced to sign these pledges, just given the opportunity. AWESOME!

First place goes.......

To whoever can say what this is a picture of.................