Mother's Day 2013

This was a weird one... Usually we get together with my family and make a day of it. This year however my parents were in Arizona for the funeral of my father's best friend. So it was a somber time and even though it was about moms I felt less than excited. My mother was sweet enough to think ahead and get my present ready before going out of town, bless her. I am officially up to my ears in Tardis stuff! Thank you Mom!! She amazing these past eight years especially, being Nana to the boys and my biggest support system in all that we have gone through. I loved her before but I know that I took her for granted most of my life and its from becoming a mother myself that I have truly seen how much I admire her and how she is always there for her children and grandchildren whenever we need her (sometimes I have to tell her to take time for herself, it's okay!!) I love you mom...

Basically it was me and the boys hanging around my parent's house (house sitting while they are away) though we made a to-go run at Cafe' Brazil to break up the day. The night before my bestie came over and we made her own Gram Olive's Banana Bread, and I pretty much lived off of it til it was gone (yep, its gone!). Cyrus helped us make it for a few minutes, then he spent the rest of the time playing in the flour over the sink "practicing" measuring it. I should have taken a picture of that, it was so cute and he loved making a colossal mess in the sink. Lol I will have to take a picture of them soon to post to make up for my lacking in Mother's Day photos. :) 

I am so very lucky to be the mother of my two little rascals, and having them in my life has been the best thing that ever happened to me. A couple of miracles these boys, who have turned out to be such characters who make me laugh, cry, scream and shout, and fill my heart in a way that I didn't know existed. It is because of them that I am able to celebrate this day. Thank you boys, I love you both with all my heart... 

Love and Logic Take Me Away...

I don't know how many people know about Love and Logic, but it changed my life so much so that a couple of years ago I got a tattoo about it. The hard part is keeping up with the philosophy... Allowing the boys to choose their consequences rather than picking the one I want them to have, being consistent (SO hard!), and using as few words as possible so the lesson isn't lost in the lecture.
Today in particular I am having a hard time with the L&L style and am really trying not to revert back to the yelling and screaming because even though they are successful in the short run, in the long run however it is quite counterproductive. Sometimes I need a refresher course, especially after they have spent the weekend away. And today is one of those days...

My Love & Logic tattoo, see two "Ls" in the heart?

Sad Baseball Perspective

So yesterday Mother Nature decided that Texas was not yet ready for its normal hot and icky May days, and brought in record lows to keep us all on our toes. As a result, Cyrus' baseball game was cancelled due to... extreme cold? I can hear all the out of state people laughing over this... yeah I kinda did too, but I wasn't interested in coaching in the cold windy weather so... The part that saddens me is how excited Cyrus was that baseball was cancelled. :( He has had a hard time enjoying baseball due to his ADHD. He gets frustrated after about 30 minutes of practice and asks to go home repeatedly during the games, throws tantrums in the dugout and sometimes on the field. We even got a special prescription of his meds to help him during practices and games (which regularly cut into our strict dinner and bedtime routine). So its likely that he wont be playing next season, but this has gone over so much  more than the karate classes we tried last year. The season ends in a month so we will stick it out and then I will talk to him about what he wants to do about next season. On a side note, I have LOVED being one of the coaches on the team, and I will be sad when/if that ends.

Look What I found...

• It's my old blog from forever ago!! Its been literally years since I posted last, and things are very different these days, but I am happy to say things have never been better! We are all happy and doing well. The boys and I live a mile down the road from where I grew up near Dallas and so we get to spend time with Nana and Grandpa often. Their dad lives about 20 min away and sees them every other weekend and attends their school events and such. It was a hard road those first years following the divorce but like I said, things have never been better. :) So I thought I would start my blogging up again and since this old thing is still here, might as well use it! Collin and Cyrus are doing great! They are 8 years old (wow!), in the 2nd grade and just have the most amazing personalities. They are so different! They even attend different schools to accommodate for each of their needs (many cheers for the buses that pick them up and bring them home).
  

  

  At Cyrus' baseball team pictures while Collin is dressed up in his Doctor Who suit.

  
  

  
  

  Collin

  
  

  

  The Doctor is showing off his Sonic Screwdriver.

  
  

  

  Two Silver Medals in The Special Olympics for the 50 Meter Dash and
    The Standing Long Jump.

  Collin is doing really well with his CP; his most difficult task involves speech, but he is averaging 3 word sentences these days and even got discharged from PT last summer!! He still gets OT after school and vision services during school, but otherwise is a typical little geeky boy. He loves to play dress up- popular costumes include Police Officer, Grandpa, Hunter and lately his character is The Doctor from Doctor Who (I am completely to blame for this, as my love for the show borders on obsession). He is very clever and has a great sense of humor. :) This past month he participated in the Special Olympics (see pic above) and won two Silver Medals for the 50 meter dash and the standing long jump!! Who would have thought that this little boy would be walking much less running, but let me tell you he earned that silver against four other boys who were much bigger than him. Right now he wants to learn how to play golf.
  
  Cyrus
  
  
  

  

  There's that charming smile...

  

  Practicing his moves for baseball.

  
  
  Cyrus is just a big bundle of energy and emotion.  He loves the ladies, and has a crush on Miley Cyrus right now (upon hearing of her break up with a boyfriend over the radio recently, he screamed from the back seat "Now's my chance!!"). He is in a special program for children with behavioral and sensory issues, which he has been excelling in this year. Its a small class of about eight students with three teachers, and over the course of his elementary school "career" he will slowly start to integrated back into the regular classroom. He has serious ADHD,  Sensory Integration Disorder, and is blind in his left eye but it hasn't slowed him down one bit! :) His VP shunt has been doing great *knock on wood* and he wears a helmet at all times when playing baseball. He loves creating things with legos and hunts down aliens and mine craft creatures called Creepers and Endermen. 
  
  
  

  

  Happy St. Patrick's Day 2013

  
  As far as myself, well, I went back to school at Toni & Guy Academy and got my cosmetology license. I am now self employed doing hair. :) It allows me the freedom to be home with my boys and I love it! I am very happy with how my career is going and my schedule with my family. So there is my little catch up spiel. LOL I have high hopes for 2013...

School Pics- 5 Years Old

Collin; they have to work to keep his super thick glasses
from reflecting. He has gotten thicker ones
since this photo was taken too.
-10.5 and -15 for those who are prescription savvy.

Cyrus, who has officially discovered his "picture smile" :P
Oh he is a charmer too; lady killer at 5,
what are we in for later?

Returning to the Blog

Wow, over a year. It has been too long since I was blogging, and now that the boys and I are moving to Denver, its time to start up again. Things are a changin' here and I am going to need to start updating all my family and friends with the goings-ons of Collin and Cyrus.

We are moving January 1st, and the clock is ticking! So much to do, but at least the important stuff is almost completed. Only one doctor left to set up an appointment with and set up evals with the home health therapists. We have been very blessed with our doctors and therapists here in Dallas/Ft Worth, and I will always praise Cook Children's Hospital for the amazing job they did for my boys (I am particularly sad to be leaving Collin's speech therapist, she has been superb!).

And for the future, I am excited about our new home away from home, The Children's Hospital of Denver, which, like Cooks, is also one of the best in the nation. Last year I visited the hospital when I was visiting my friend (and soon to be roommate) and it is an awesome campus.

It is going to be a difficult transition as the boys have lived over half of their lives now in Nana & Grandpa's house, so I am mentally preparing for that first month to be rough (as are the other people that we will be living with). Luckily my cousin and her five year old son live about ten minutes away and I am so jazzed about hanging out with her and seeing all the boys together. Getting them set up with things to do and people to hang around with is going to be very important in how quickly they adjust.

Tonight Nana & Grandpa had some quality time with the boys out looking at Christmas lights. They had a blast and will probably be doing that a few more times before the holidays are over. It has been stressful on everyone, this sudden move immediately after the holidays, and this new year is going to be unlike any other. So hold on to your hats people, off we go!

They grow up so fast

I just had to share these... The boys are in a public school preschol program for children with disabilites, and one of the perks is that we get school pictures taken. :) How can you not love these faces?

Cyrus is probably saying "Cheese!" :) Adorable!

Its just the best picture of Collin I could have hoped for!

...Three Days Later (Four Years Ago)

I have been stuck in bed at the hospital, not even allowed to move onto my side for fear of how it may jostle Cyrus' placenta and I have been miserable. The medication has kept me just short of lucid and sometimes I would participate in conversation and sometimes I would blurt out bits of what I was dreaming. My husband and I had finally picked out names for both boys, Collin (meaning lion cub) Leander (meaning bravery) to give the little guy strength. Cyrus (meaning sun) Theodore (gift of God). So there, one thing down, and the NICU could replace Collin's label from Swain, Boy A to Collin Leander.

My daughter and nieces had come by with a pumpkin they made for me and the babies in their Halloween costumes. I was sad that I was missing Halloween with them. However I was determined to make this last... but my body had other plans for me yet again. The doctor came in after dinner and told me that my fever was not going down, and as a result of birthing Collin but not his sac, I had developed an infection. This no longer made me Cyrus' safest place to be. So at least this time I was able to prepare for the cesarian, my family was there, even my brother left his 10 year class reunion to make it.

Shivering from the fever and terrified (for those who didnt know, I had planned on having a home bathtub birth, so having a c-section was on my list of NOT to-do's) I was wheeled into the OR. Ewwww, epidurals are frightening! But got that overwith, wearing my bright green fuzzy socks, I was prepped and ready to go. I kept crying, for this had really been the moment when I realized my beloved pregnancy was over and my kids did not have the beginning I had dreamed of. They asked me if I wanted drugs to help me relax, but I told them to wait until Cyrus was out, then load up on the drugs!

It was so much easier than what I had been through a few days ago. My husband watched the birth with morbid excitement, keeping me up on every step. I asked what X feeling was and he would describe what they were doing; I was interested but had no desire to see for myself. Then the sound of Cyrus' cry filled the room. He was here! This time I had my glasses, and he was in better health so they gave us a minute to look at him and gently touch his tiny fingers before taking him to the NICU. The NICU, this would be my children's home for the next four months.

Cyrus Theodore born at 9:48 PM, 1 lb. 15 oz. and 13 inches long. I was not quite half way through my pregnancy and it was already over. I missed out on a lot that I still grieve over, but the alternative would not have given me these amazing boys. Wow. I dont even have toddlers anymore, really, they are little boys now. When did that happen? I am blessed with these two miracles that overcame their 20% survival odds and still manage to impress us with their personalities and abilities. Happy Birthday to the strongest people I know!

Happy 4th Birthday, Oh Cyrus My Cyrus!!

This Day Four Years Ago

Right about now I was just taken from one hospital in an ambulance to another where they were more equipped to handle "a woman in my condition." In labor 3 1/2 months early, only 25 weeks along, I was freaking out about what was going to happen to my babies. I had only discovered a few weeks earlier that I was even having twins. Now the doctors were doing whatever they could to keep my boys from being born. The contractions were already starting to race one another and I felt terrified and out of control. Little did I know that Collin was determined to arrive in only a few short hours.

It was hazy, as they were pumping my veins with steroids and this magnesium crap that made me feel horrible, but I was only partially aware that the pain I was going through was labor... I was having a baby. The nurse had been checking me regularly to see how far along I had dilated, the last time she had checked I was about a 5. I had been in so much pain that I was doing anything I could to try to minimize it... I didnt realize I was pushing (remember no birthing or lamaze classes yet, they were scheduled for next month). The nurse came by again, mumbled something in a terrifying voice and took off. Not two minutes later I was in the OR being prepped for emergency cesarean. What did she see that freaked her out? Collin's feet.

Well, the doctor realized that it was safer to just birth the child than to try to go the c-section route and told me to push.. and after two pushes Collin was born! My husband did not even get into the OR in time it happened so fast. So I got a blurry look at my son from about ten feet away (I didnt have my glasses on) and then he was rushed off to the NICU and I back to my room. Collin didnt have a name yet, and wouldnt for another 36 hours or so, but he was out in the world, and Cyrus was taking the opportunity to stretch out in my belly for as long as possible. My doctor told me the longest separation between twins he had ever seen was five weeks, not knowing then that Cyrus only had three more days before it was his turn to make a grand entrance, we were hoping for as long as possible...

Collin was born at 3:51 PM a mere 1 lb. 12 oz. and 13 1/4 inches long. So here I was, having just had a baby, and I was still pregnant. Yeah, tell me about it. Tune in again on Thursday for the exciting colclusion to this story... lol

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!

New Diagnoses

I finally got professional pics taken of the boys in June.

This is the only one that made the cut. LOL

Hello world, yes we still exist and we are doing well. :P It has been some time and we have been staying busy with all of Collin's therapy (Cyrus has some too, but not nearly as much as Collin). There is so much to say and I don't want to bog you all down with stuff (but I will, LOL) so I will start off with the most important news we have received about Collin.

We went to the Neurologist last week and got a number of official diagnoses for Collin. Some were to be expected and one was more preemptive than I had thought. Firstly, Collin has been diagnosed with Ataxic and Spastic Cerebral Palsy (CP). The gist of that means that Collin has low muscle tone and poor coordination, tight muscles resulting in stiff movements that makes both gross and fine motor skills more challenging. We have been waiting to get this diagnosis since I have been fairly sure he had CP for months now. This gives us the benefit of now allowing our insurance to provide ALL the therapy he needs, not just 20 visits a year. This also qualifies him for Medicaid for life. He will be able to walk but he will be slower and more awkward than most and may be in ankle braces for an indeterminate amount of time. He is very close to walking now, regularly taking 4-5 steps at a time. He may not be able to write very well, but that remains to be seen, since Collin is so stubborn, um, I mean determined. He works really hard!!

The next thing he was diagnosed with that we knew was coming was Sensory Integration Disorder (SID). Everyone, including therapists have been working on this for a long time, but apparently you have to be a certain age before you can be officially diagnosed. This essentially means that Collin's brain doesn't properly register input from his senses (touch, taste, smell, etc., pain, as well as balancing the body). This either causes over stimulation (aversion to many unusual textures or tastes) or under stimulation (high pain tolerance, can get antsy if not stimulated enough). So nothing new there.

The new one that surprised me, not because I didn't think it was possible but mostly because he is so young, is Aphasia, specifically Broca's Aphasia. This is considered an Expressive Language Disorder where he has difficulty expressing himself verbally. In Collin's case, his Aphasia is severe enough that they do not believe he will ever be able to communicate verbally. The Neurologist says this is a result, a side effect if you will, of the CP. He has said a few words before like "mama," "more," "up," but they are very hard to understand and you have to really be listening to hear them and speaking only a two or three words in an entire week. Collin mostly communicates by pointing, nodding, and using his favorite sign for "all done" which in Collin's case also means: no, stop, I want down, I don't want to eat that, leave me be, I don't want my diaper changed, and the like.

So what are we going to do about this? Well, first he will start using Picture Exchange Communication System (PECS). This will consist of laminated cards that will be velcroed on a board that he will bring to us in order to get his needs met. Once he has that down we move on to Speech Generating Devices (SGDs), like the MiniMo, that are computers that will actually speak for him. He will push the buttons on the screen that represent what he wants to say and it will say it. For example, if he was hungry, he might push the button with an apple on it, and it would say "I'm hungry." This will be great for Collin but we have to train him how to use the symbols to communicate using the PECS before we qualify to get the SGD. Whew! What a mouthful, eh?

Ok, so what else? Well, our nutritionist has proclaimed the boys to be at healthy weights and heights so we have weaned them off of the Benecalorie food supplement, and are slowly decreasing their Pediasure. My hope is that this will encourage them to eat more solid food. Cyrus' favorite solid is bacon, saying "Bacons Please!!!" Collin loves eggs, and of course everyone loves french fries and tater tots. But we are still having to puree most of their food, and still feed them baby food and things like yogurt, and yes, we still have to feed them. Its getting better but it is hard to get them to feed themselves anything that isn't dry, like crackers or cereal (or bacon, hehe).

With the rest of our time (when we aren't doing medical stuff) we go swimming in Nana & Grandpa's pool. Cyrus LOVES to swim and will leap into the water, not caring that he risks his life by doing so. LOL He likes to get dunked under water and be tossed into the air. He asks me all the time, "Mommy, swim! Swim Shorts on, mommy. Please! Swim, swim!!" Collin is much more reserved and prefers to be held and just lounge around in the water. They love to color (and eat the crayons!!) and enjoy going for walks in the wagon, when its not too muggy outside. Oh and they LOVE to play in the bean bin. We got this Rubbermaid bin and filled it with beans to help with Collin's SID, and it has been great! Cyrus gets so excited and tosses beans up in the air, screaming "Its raining beans!" Yeah, there are beans all over the house. They play with each other a lot more now, really rough housing and wrestling while they laugh. It worries me how rough they are, and how other kids wont find that sort of play fun when they start school. Well let us hope that they learn before then, I swear I am working on it! :P

So that is what has been going on here. Oh and Collin's eye surgery has been postponed until October. Grrr, so its back to fighting him with the eye patch again. We are hanging in there and doing the best with what we have been given. Its easy to feel appreciative instead of resentful that Collin has all these issues, Cyrus with his shunt problems, when you think about how lucky they are to be alive in the first place!! It's hard to have hoped for better, since it could have been so much worse.

More great pics to come!

Where has all the time gone?

Two months? Has it really been two months since I posted last? Life happens and then you turn around and everything changes... Well, it is certainly about time that I came back and let everyone know how Collin and Cyrus are doing and of course post a couple of pictures!

Proud Grandpa smiling with the boys having a great time...
BTW their shirts say "We do all our stunts"

Collin has SMO ankle braces to help his feet alignment and a Pediatric Walker at home to encourage him to get off all fours. I tell you what though, that is the fastest crawler ever! No wonder it has taken him so long to want to walk, he is almost as fast as Cyrus is running- almost. He is getting therapy three days a week, Speech, OT, & PT. He likes the walker and uses it especially outside, and is pulling himself to standing in the middle of the floor on a regular basis and taking a few steps at a time. He is very driven and motivated and I am so proud when I see him fall down, smile, and then get right back up again. He is vocalizing so much more now, vowel sounds and a few consonants. He occasionally says: more, up, mama, and nana. Most of the time he uses simple sign language, points and grunts, or nods and shakes his head. He understands so much and I have used flash cards with him and asked him to point things out in books so I know he gets it. He just cant say it. Collin is so sweet and polite, he is always offering things to Cyrus and gets upset if Cyrus is upset. He has his moments of revenge where he pushes his brother over but overall he is just a sweet, happy little boy.

Collin just out of bed, into his walker and trekking through the living room.

I am still waiting on the Nutritionist with ECI to come back from maternity leave, then we may get some more info on Collin's eating problems. Some things are done out of necessity, others out of convenience, and still more because there is nothing else to correct the problem. Collin's problem with food is not just that he doesn't want to feed himself (I know the desire is there, the coordination may be low), but he doesn't understand that essential correlation between food and hunger. This probably goes for both boys. Here we are at 2 1/2 and they still take bottles at naptime and bedtime of Pediasure because it is the only way to keep their weight up. They do not feed themselves more than a few bites of food, and that's only if they will eat it to begin with. Cyrus is a stubborn and picky eater, but he will eat you out of house and home of bacon. "Bacon Please!! Please! Bacon! Great!" And I just want to say that my wonderful boys are weird... I cant force them to eat donuts, Collin wont eat most sweets including chocolate (Cyrus loves chocolate and so we occasionally give him some of Grandpa's sugar free chocolate), Cyrus will cry if you try to feed him pizza, and they think club soda is a treat (ok, that last one is my doing since I do not want them drinking sugar packed sodas...).

Collin standing up and putting his Easter egg in to his basket.

Cyrus is a piece of work. He amazes me everyday with what new phrase or words he las learned. He speaks in short sentences and phrases, knows his shapes and colors, counts, and takes great pride in identifying and many things in the room as you will listen to. He tells me when he is hurt "Mommy, fall down! Blankie please... thank you much! Fall Down!" Once I asked him where it hurt and he just cried "I don't know!" It was so sad and cute all at the same time. He is a charmer and good at changing the subject when he gets in trouble. A tactic that I didn't think could be genetic, but it clearly runs in the family...

We had a scare back in the beginning of April where his shunt tip was embedding itself into the brain matter and had to be replaced- again. But the procedure went smoothly and he and I spent the whole afternoon and most of the evening wandering around the halls, going for wagon rides, coloring, playing in the main floor play area, and finally asking the nurse to give my son some Tylenol just so both of us could get some sleep! He has been just fine ever since, but every surgery scares me. The average shunt gets replaced every 5-7 years, so far Cyrus is averaging one every year. Three shunts in less than three years just doesn't sit well with me you know?

Cyrus coloring while he tries to pass the time in the hospital after his shunt revision.

All in all however, I have to say that the boys are doing wonderfully! I am so proud of them and their resilience to all sorts of changes and stress to still be happy and fun loving boys. They have pillow fights in their cribs sometimes at naptime, they are good at sharing, they help each other and get upset if the other one is hurt or in trouble. They laugh and giggle and cuddle... I love to watch Cyrus standing over Collin and mindlessly play with Collin's hair while they watch TV together. They are two of the best things that ever happened to me and have been critical in making me the strong person I am today. I owe it to them for teaching me not just how to be a good parent, but I am learning how to take care of myself too.

End of Winter, Hurray!

This has been the coldest winter in Texas that I can remember, and considering I have lived here my entire life, that is pretty cold. The weather has risen back into standard pre-Spring temperatures of 60s-80s, and even the trees are starting to bud leaves. We have been taking advantage of this beautiful weather to go for walks and play in the backyard. They love being outside but I have to make sure that Collin wears shoes or he will scrape his feet up and not even notice. Yesterday we were playing outside and when I noticed that Collin had four bites (looked like ant bites or mosquito bites) on his hand that he had not even made the smallest mention of, I decided it was time to go back in.

I have a question for all you moms of toddlers out there... What are your thoughts and ideas about disciplining toddlers? I am starting to try Time Out with the boys to help discipline them, using a small pack-n-play as the Time Out spot (because there is NO way I can get them to stay in one spot voluntarily). One of the ECI therapists said they should be in Time Out for one minute for each year old, so two minutes at a time. Now Cyrus has really taken to this concept and the mere threatening of Time Out has caused him to stop doing whatever his isn't supposed to be doing, but on the days that they go in Time Out they wail and cry at bedtime. Is it because I am using a crib-like environment for the Time Out spot? Cyrus will repeat over and over "time out" when I bring it up and then go over to the pack-n-play and point to it. He certainly gets it. I am not sure if Collin does yet. Last night Collin cried every time I left him in his crib for hours, wailing whenever I would put him down until 11:00 PM! I would go in and hold him until I thought he was asleep, but he would start up again moments after I left the room. Maybe it is just because it is a new thing and they will stop this, but it certainly concerns me.

Monday Cyrus is going in for his semi-annual CT scan to make sure his VP shunt is in place. They will have to sedate him to do it because of his age, so he will spend the afternoon groggy and sleepy. We will go see the neurologist on Wednesday to hear the Dr. tell us that the results of the scan are fine.

I got a call from the hospital about Collin's pH probe and they said, yep, he has reflux. Uh, thanks. Tell me something I do not know! We will see the Gastro Dr at the end of the month and hopefully she can give us some more comprehensive information about his test. Collin has finally begun his Speech therapy at the rehab center through the hospital, which is good, but now he wont be getting Speech therapy through ECI at home. He had his physical therapy evaluation this past week and they are having him fitted for orthotics, which are basically foot braces to keep his ankles in alignment. They are also reintroducing the idea of the pediatric walker, saying that they do not anticipate him being able to walk on his own for up to a year from now, so the walker could be a great way to encourage him to be upright (in a lesser way like the Ponywalker, perhaps?) We shall see, since we have to wait the 6-8 weeks for the insurance to approve of the therapy.

Big Cyrus smiles!


Sweet Collin smiles.


I am so cool!


Coloring with chalk in the backyard.


Collin getting a closer look at the shapes Mommy drew for them.


My friend Tara came up from San Antonio to visit for a weekend.
Cyrus & Collin loved playing with her! We love you!