We are still alive...

So we are still alive, and although my life has been crazy, the boys have been doing great. Now that things are starting to have some semblance of normalacy (for us anyway) I am hoping to get back to doing some updating on a regular basis. But just the five cent summary: Collin and Cyrus are doing well in school. Collin is impressive with his sign language even though his coordination is limited, eats everything, tries whatever Cyrus tries. Cyrus is just a regular hyper three year old, always talking always getting into things, not wanting to eat.

Medically they are both wearing the eye patch now (yeah, you can imagine how well that works!) but Cyrus had an MRI recently which showed that his twitching in his right eye was not neurological, thus the patch. Collin walks and runs and falls all the time but shakes it off and keeps going. They get sick all the time from being in school but we have been lucky that we have only needed a few visits to the doctor and nebulizer treatments to keep them going. They wear me out in a whole new way these days, because they are acting like regular little boys, crazy hyper, but pretty normal all the same. :)

I would love to show you all the latest pics of the boys but Blogger is royally peeving me, so please take a quick moment to go HERE and see them on my original xanga blog.

Merry Christmas!

I know it looks like he is trying to strangle him, but
Cyrus is actually giving Collin a hug
and telling him that he loves him.

Kisses for Christmas!
Mommy, you really should comb their hair...

Look we have Candy Canes!!! What is up with the face... and the hair Cyrus?

Merry Christmas and Happy Holidays to everyone!! We are blessed to have such wonderfula nd excited little boys enjoying Christmas for the first time this year.

School and Surgery

When we last met our dynamic duo, they were celebrating their third birthdays. Well, since that time the two heros have begun a public school program called PPCD (Preschool Program for Children with Disabilities) where they go to an elementary school five days a week from 8-11 am. They follow the ISD school schedule and after some adjustment time are now enjoying very much. The school system offers therapy, mostly Speech and OT, also some developmental through out the week on a regular basis but does not exclude them from private therapy for insurance purposes. Cyrus never had a problem and never even cried when he first began, but Collin had some problems and we had to have a meeting with the teacher and the principle to ensure that his SID (Sensory Integration Dysfunction) was being addressed to help him adapt. They were originally in separate classes as well but after putting them together Collin really improved. Now the two of them race for the door and no one even notices that I am leaving.
They are learning all sorts of things and its great for them to be around other children. Collin has learned new signs and they use the PECS cards in school as well, so he keeps getting practice even at school. He even signed to me at supper the other night that he wanted a cookie. Silly Collin. LOL Cyrus has been quoting songs they learn in school and talks about his friends. Its a good program to supplement their therapy and gives me a little free time in the mornings to run errands and such.

And by the way, Collin's Dynavox will not be in for a while. What I thought was the ordering of the device was actually just the ordering of a voucher which I have finally received that I now have to send to the Dynavox company myself and order separately. Geeze what a hassle! I will let you know whenever it comes in... and I foolishly thought we would have in before their birthday at one time! HA!

On November 27th Collin had day surgery on both of his eyes. They reattached and shaped the muscles to help them be equal in strength. He had really bloodshot eyes for a while and had to put drops in his eyes three times a day for a week!! That was not any fun. But the results have been amazing! He is walking better, his eyes aren't crossing he has improved his fine motor skills... and all since his surgery. So obviously the surgery was a success! :) I have been busy lately and have been slacking on the posts... and I am out of time now too... just wanted to play catch up for a minute!

I hope everyone is doing well and enjoying the holidays, getting their shopping done and all that. The boys have gone light looking a number of times already and they love it! Cyrus has to gives us his report on what is on each house as we pass. Its so cute!

Happy 3rd Birthday Cyrus!

It's your turn to shine now, you are finally 3 years old too. I can see it already, the 72 plus hours between you two will drive you nuts, hehe, but what amazing results those hours gave you for your health. Only three extra days made you strong and proved your determination (and perhaps some of your defiance, :P); look at you now. Big and strong, healthy as can be. You can charm your way into anyones heart with your boyish ways, able to say about anything and you understand people so well already. Everyday you impress me with what you know. You love to give hugs and kisses, say "please" and "thank you," and "sorry" when you think you've done something wrong ( even if its running into a piece of furniture!). I love watching you cuddle up with ALL your blankies, and just about any blanket will do, the more the merrier. I love that you love to cuddle with me and cover me with all your blankies. LOL

With all your preemie issues and shunt problems you have dealt with, so many surgeries, you never let it keep you from trying new things and climbing new heights, literally! You are very social, gregarious, and dramatic, apparently a lot like me when I was your age, according to Nana. :) You will likely be the class clown, adored by teachers and classmates alike, but also the one who gets sent to the office for not sitting still. Thank you so much for wanting to love life and fighting so hard to be here now. You make everyday exciting, and even when I hate it, I LOVE IT because you are here. Happy Birthday Cyrus, my shining star, I love you!

And just a reminder (again- for myself and everyone else :P ) Cyrus was born 1 lb. 15 oz. and was 13.25 inches long... and now he is 32 lbs. 15 oz. and 37 3/4 inches!!!

Happy 3rd Birthday Collin!

You are three today, my little smarty-pants. So much you have endured and overcome, yet you still remain a happy spirited and loving little boy to all. I cannot believe how amazing you are, outshining all potential problems for what "could have been" that you faced due to your situation. You are patient, attentive, impressively intelligent, snugly, determined, stubborn, so very hard-working. Simply a beautiful soul.

Your obstacles are nothing for you as you face them head on, continuously out performing all expectations for what you are capable of. And even though you may not be able to speak with words, you still have an amazing talent at getting your thoughts across. Who would ever have known that knowing four sign language signs (all done, please, thank you, and music) and just nodding your head yes or no would only be a small part of how you are able to talk to everyone. Your body language speaks volumes and your ability to use the PECS cards just remind me once again how much is really going on inside that quiet head of yours.

So here is to you my lovely little boy, my Collin. Happy 3rd Birthday to an amazing person who I believe will continue to impress people until you are old and gray. I love you.

And just a reminder (for myself and everyone else :P )

Collin was born 1 lb. 12.5 oz. and was 13 inches long...

and now he is 29 lbs. 6 oz. and 36 inches (3 feet tall, and hey, he's 3! hehe)

What did you say? Its my birthday? Awesome!

We are going to a dog park on my birthday,
how cool is that!?

Our Chosen Device- The DynaVox V

So the past two weeks representatives from different companies have been coming to Collin's Speech Therapy. After learning about what each had to offer, seeing how he reacted to the different devices and speaking with the therapist, I have decided on the DynaVox V. It is really easy to use and has a ton of options that will grow with him. Both reps said that they think Collin has at least average to above average intelligence and needed a device that would accommodate his growth over the next five years, since that is about how long these types of devices are expected to last. My Collin is SO SMART! :) The Springboard Plus that I had mentioned before apparently is already too simple for him. The rep said that he would be starting on its most complex level and therefore would end up limiting him within a year. The DynaVox rep said the same with the MiniMo. How cool is that!? Collin is smart enough to use the bigger more complicated devices!! Anyway, I was just very excited and had to tell everyone!

Collin's will be blue like the one on the left, but the smaller size.

Collin and Cyrus love their new tiger pajamas.

Do a little dance... oh no wait, he is just about to fall over. LOL

My studious Collin is deep in his reading material.

Cyrus hated it at first, but then I let him
see what he looked like in it...
He is a caterpillar, by the way.

Speech Here We Come!

Collin has been approved by insurance for his ACC Speech-Generating Device (SGD) and for the the two Speech therapy sessions we will be working with reps from DynaVox and Vanguard to determine which device will best suit Collin's needs. This is so exciting!!!!! Collin has developed some of his own signing to talking, like putting one hand over his ear when he hears something and then pointing in the direction of the sound. But once he has his SGD I have a feeling he will become as chatty as Cyrus.

Just to give you an idea of what he will likely be getting, these are the top two on my list this far, having not had any professional input from the reps. The Springboard Plus is a Vanguard product that looks excellent for his needs, allowing for lots of growth. They also come with keyguards that have raised edges so Collin wont mistype the PCS (Picture Communication System) icon he is trying for. The other I am looking into is the MiniMo by DynaVox. It is simpler and may have fewer options, but so far it has been the only one I have found with a child-neutral voice on it. Still very cool though, allowing for lots of growth as well.
So wish us luck, in the next two weeks we may have Collin's SGD ordered!!!

The MightyMo/MiniMo by DynaVox

The Springboard Plus by Vanguard

Moving Right Along

Keeping busy with all of the therapy appointments and such, but the most exciting thing going on right now has to do with Collin. With the diagnosis of Aphasia, we have turned to PECS cards to help Collin communicate his needs. We started off with using a poster board with cards that I made off the computer using the children's shows we watch at home. Collin has to pick a card, take it off the board, and hand it to me. And it was so amazing... I found out for the first time what Collin's favorite show was! (The Backyardigans) Just learning something as simple as that was thrilling it almost brought me to tears. He has picked up on how to use the cards really well, and I ordered the standard PECS cards to help us with some basics like food, toys, hygiene, colors, shapes, etc. He loves his board and is often pointing to it when he wants to tell us something. Amazing to finally find out what is going on in his head that takes more than just pointing and nodding. He has vocal sounds, and he has an "affirmative" sound, like "mmmmm" but still words are very few and far between, and only if you know what you are listening for. It took him no time at all to figure out how the cards work, and Cyrus calls them "Collin's Cards!" I look forward to seeing how fast he develops this skill so we can move on to using the cards all the time.

Homemade PECS board. The big cards are the ones I made
and the little ones are the one I bought from the PECS people.

The other exciting thing for Collin is that he is SO VERY CLOSE to walking! He is taking 12-13 steps on his own these days and if I hold his hand we can go for short walks, go into the grocery store, even into the doctor's office from the parking lot. He is not using his walker as much, but prefers to walk on his own, fall, and then get back up again. We are being for vigilant about making him walk around the house too, not letting him crawl everywhere since it is still faster. Not wanting to make predictions, but he could be walking (not completely steadily mind you) on his own by his birthday maybe? Now he still wears his ankle braces to help support him, and its possible that he may never be steady enough to run fast, but with this kid's determination I would not be surprised if he can run somewhat.

Collin playing in the rain, loving the big umbrella.

Cyrus is trying to push past Collin to get to the grass.
Wouldnt it be easier just to go around?

So many exciting things going on for Collin! Cyrus is currently obsessed with outer space, planets, rocket ships, anything having to do with space. I have glow in the dark stars on their ceiling in the shape of constellations with glowing paint to connect the stars as well as the planets (also glow in the dark) in order using the lamp as the "sun." He also is an escape artist, able now to climb back and forth between the cribs (which are no longer next to one another), up and over the cheap wooden babygates, and can maneuver into any nook and cranny that you never want your child going into. Talking constantly too! Last night he woke up around 4:00 AM and was calling me, whining, so I go in and he tells me, "Mommy I cant sleep anymore. Want down to play." Holy cow he is speaking in multiple full sentences! I love it!! Found out the other day that Cyrus loves to play in the rain and he also loves to go swimming (every freakin day telling me "Mommy want swim! Put suits on, Mommy. Come on, want swim!"). So much fun.

Oh I almost forgot, they went to Six Flags for the first time last week and rode their very first roller coaster (kinda roller coaster, a train ride, but still very cool!) and had the best time! When it was over Cyrus said, "More! Mommy ride more!" They will never remember it but I will never forget. :)

Waiting in line for their very first roller coaster at Six Flags.

Look at them up in the very front. Cyrus is even driving!