Preemies Then Twins

We are still alive...

2008-03-09T19:24:00.003-05:00

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!

2007-12-25T14:24:00.000-06:00

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

2007-12-13T15:16:00.000-06:00

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!

2007-10-27T18:53:00.000-05:00

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!

2007-10-27T15:48:00.000-05:00

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

2007-10-25T02:51:00.000-05:00

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!

2007-10-11T12:12:00.000-05:00

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

2007-09-13T16:53:00.000-05:00

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

2007-08-20T12:23:00.000-05:00

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?

2007-06-05T01:45:00.000-05:00

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!

2007-03-02T15:14:00.000-06:00

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!

Collin's EGD & pH Probe

2007-02-13T21:58:00.000-06:00

Early Monday morning we went over to the hospital and Collin had his EGD (Upper GI using a camera probe) and had a pH probe put in his nose to monitor his reflux. With his heavily scarred veins they did have to stick him twice to get a vein, but he was out at the time so didn't feel it. We were in and out in about four hours, and although it was fairly fast, Collin did not do well in Recovery. He never seemed to get comfortable and refused to drink anything. Luckily the nurse got permission from the anesthesiologist to let us leave even though he had nothing to drink. Once we got him in the car he was fine, and I sat in the backseat while my mother drove my car home. BTW, there was NO space for me in the backseat between those two carseats and had to sit at an angle just to get my butt on the seat! Gives me a new appreciation for my daughter having to sit there when we travel.

Once we were home I had to document his coughing, gaging, spitting up, sneezing, irritability, sleep, and feeding schedule until 6:30 AM Tuesday morning. Then I got to take out the tube and rush back to the hospital to return the data device by 7:30 AM. Woo Hoo, getting up at the crack of dawn two days in a row after no sleep. I was paranoid that Collin was going to wrap the tube around his neck in his sleep, so I checked in on him every two hours. It didn't, and I used some footy pajamas that have the snap at the neck to keep the tube out of the way (a little trick I learned in the NICU). He did great with the tube and Cyrus spent the night with my parents so I could focus all my attention on keeping only one set of hands away from the tube.

I was really impressed by how well Collin did once we got home, and whenever he tried to scratch or pull at the tube I scratched his nose for him, which he thought was a fun game. Whew! He ate well, slept well, and over all was less stressful than a typical day with twins. Funny, even when he has a tube down his esophagus taped to his face, carrying a data pack that he was not supposed to play with (uh-huh, yeah right!) it was easier than taking care of two kids at once! We will get the results of the test in two weeks and will see the Gastro Dr in six weeks for a follow-up.

Collin had a blast playing with all the toys in
the pre-op area, especially this piano tiger.

Not happy in Recovery. :(

Wagon ride to the car! Yea! It was the first time
he had really calmed down since the surgery.

Playing in the sink before brushing his teeth at bedtime.
Look at that CD player sized device he had to carry around!
And yes, we took the hospital gown home, b/c Mommy wasn't thinking
when she dressed him in a sweatshirt to take him to the hospital.

Happy 2nd Adjusted Birthday

2007-02-07T22:08:00.000-06:00

Today is Collin and Cyrus' 2nd birthday... if they had been born on time. It seems so long ago since they turned two and only now are they "caught up" with their due date birthday. Happy Adjusted Birthday my sweet boys! Cyrus is pretty much a typical toddler, caught up is most respects. Collin can say "mama,"and uses some sounds to convey words like "mm" for more and "uh" for up. He is trying to pull himself up to standing on his own and can come up to standing using only my legs (while I am sitting on the floor) to stand up. He is trying really hard and getting closer every day. But other than that, he is getting caught up too... amazing little boys. What a great birthday present for their adjusted birthday, happy little miracle boys.

Collin got his new glasses today, and looks ever so smart. I knew his old glasses were too small for him but to see him in these, they look, well, huge. But he smiled immediately when the lady put them on him and didn't even try to take them off. He is having his upper GI & pH probe surgical procedure Monday morning. That will be fun. Uh-huh. We finally got approval for Speech therapy through the hospital today, and will start in a week or two. Insurance allows us 20 sessions and the therapist recommended we do one session a week instead of two since we have a limited amount. Essentially intense therapy is good, but prolonged therapy is better, so it begins.

Cyrus is doing fine, his hernia scar is healing nicely. He has started doing this head butt thing (like the kid in Parenthood) where he likes to butt things, well, mostly people with his head. He crawls up behind Collin and butts him in the back, then they both laugh. He butts me in the face, making me wonder if my nose is about to bleed. I don't know when it started, but he has made it his new favorite thing to do for the past couple of days. He is also talking more than ever, loving to point out every blonde girl he sees and calling her Gaia, even girls on TV and on billboards. He has learned the concept of push and pull, but calls them both "push." Today he wanted to play tug-of-war with this foam strip.

Cyrus is reaching for Collin's Blankie. No reason, he just wants what Collin has.

Collin at the Eyeglasses store with his fancy tortoise shell glasses.
The same shape as his old ones, but they look so BIG!

Cyrus being sassy as usual. Hey everyone look at me!

Eye Dr, Nutritionist, & Neurologist

2007-01-30T21:05:00.000-06:00

Yesterday we went to the eye doctor for both the boys, and it was awful! They were not wanting to be there, and having to get their eyes dilated didn't help. We were there for over two and a half hours and it cut into their nap time. But the good news is that Cyrus does not need glasses and his problems with steps and changes in floor texture is not related to his eyes. Collin looks good too, but he is a little more near sighted than before and needs new glasses. Poor guy had trouble with the exam and they ended up reopening a cut next to his eye trying to pry them open for the exam. They gave me some eye safe antibiotic cream to take home. A rough appointment...

We saw the nutritionist this morning so we have their current weight/heights. She has recommended that we go down to two bottles of Pediasure a day to help encourage them to eat more food at mealtimes. But Collin has gone through a big growth spurt, so that could be part of the poor height to weight ratio he has right now (12 %).

Collin
24 lbs. 13 oz.
34 1/8 inches

Cyrus
26 lbs 15 oz.
34 1/2 inches

Earlier this morning we saw the Neurologist for the first time and he was very nice. He says that Collin is doing very well and with his progress it is just too soon to diagnose him with Cerebral Palsy. We are going back in six months and see how well he is doing then, and if necessary do an MRI. But for now Collin is good! Hurray it was great news from our doctor appointments for the past two days! Tomorrow is our follow-up gastro appointment. No rest for the preemie...

When he isn't paying attention he can stand all by himself for a few seconds...

Here Collin, Gaia, and Cyrus are all sharing her pillow on
the big pallet she made in front of the TV.
They were all a little sleepy....

Just a nice photo of big sister Gaia in her new blouse!

We're Feeling Much Better Now

2007-01-26T23:53:00.000-06:00

Thank goodness we are on the other side of that sickness! Let us hope that the rest of this winter season is far more healthy. We are getting back into the swing of things, therapy sessions, DR appointments and playdates. :)

Today we went to a great multiples playgroup that had ten little rugrats (all two and under) plus two older siblings (who luckily were the same age and therefore had someone to play with). It was chaos of course but lots of fun. Cyrus was the most chatty kid there! I was so proud that he was just conversing with whoever would listen to him; he has come so far. Collin spent most of his time turning the TV on and off and trying to get into other electronic equipment. I needed the social interaction as much as the boys did, and really had fun talking to the other moms. Although sometimes I forget that preemies aren't a "multiples" thing and get caught off guard by the looks of shock of telling my story to the new moms I meet (I REALLY summarize) and I bet those who I see us regularly are getting tired of hearing me babble on about it. What you mean your kids do not have to go to therapy every week and have seven different doctors and take RSV shots that cost more than your car?

Tuesday Collin sees the Neurologist for the first time. The gastro Dr is very concerned that Collin has Cerebral Palsy, and I do not know what is entailed in being diagnosed. Nor do I know what this would really mean for Collin and I have received conflicting reports from therapists. On one hand there is the insurance coverage increase by the diagnosis and so more therapy sessions a week to help him out. On the other hand, he may be labeled for limitations that he can overcome if not stereotyped by future teachers/doctors/therapists. I am not putting too much into this yet, but honestly it would not surprise me.

Hey Cyrus, this milk is excellent! You should try it without the lid!

Flashback to the eighties, baby!

*elbows his brother* Cyrus! Check out that thing over there!
Uh huh, sure. Whatever, Collin.

We All Got It

2007-01-21T00:49:00.000-06:00

As of today, it is official, everyone who lives in this house is sick. Craig came home from work today saying he has been feeling bad at work all day, and luckily for him he has only one more day left before his three day "weekend." Of course he will be spending his free time being sick but its better than calling in when you are on hourly wages. We were supposed to have big sister Gaia over this weekend, but with all the sickness around here we arranged it for another weekend. Which is good, since she has three more little brothers at her other house and one is less than three months old. I would feel awful if this icky bug got sent home with her and everyone got sick there too.

Collin and Cyrus are feeling a little better, but are absolutely refusing to eat. It has been a flashback to the good old days of trying to get them to eat baby food, only now they are smarter and know the tricks, like spitting it out, flailing their arms in protest, and using sign language for "all done" after only two bites. As being sick goes, Cyrus is worse off than Collin, but at the moment I think I am the sickest. My parents offered to come over for the afternoon today and babysit so I could get some rest, BLESS THEM!! I got like five hours sleep in a row, which is really good and I needed badly. Let us hope that we are all feeling better by Monday so we do not have to cancel anymore Dr/therapy appointments, because holy cow people, this is getting ridiculous!

Collin has maneuvered himself behind the cat tower
and the coffee table to get at the window. Apparently
our curtains have a little static cling going on...

Cyrus is playing with kitty, being very gentle.
With reminders of course.

Collin is holding on to the industrial size baby gate that
Craig made to go around the computer/kitchen table.
I think he has his eyes on my computer...

Cyrus likes to hide under blankets and so I
thought he might like a tunnel. He did.

Snowed In

2007-01-17T22:33:00.000-06:00

Okay, maybe not snow, but ice and sleet. We were supposed to have a playgroup for multiples today at my house and a Dr. appointment for Collin to see the neurologist. Both cancelled, and I was not upset about it in the least. There is something about being tucked inside the warm house when the outside is cold and white that makes you want to sit on the couch and do nothing. I almost did nothing had I not been preparing for company the night before. Aside from Cyrus and Collin being needy today from not feeling well, it was a lazy day. I think they might be teething but they have had the high fevers and now a cough, so maybe the teething is a separate thing and they are getting sick to boot. *throws hands up in the air* I just do not know anymore. They are sick all the time in winter, that is what I have decided.

Of course we have two ECI appointments tomorrow, so no lazing about but today we could. And then Friday, after another ECI appointment, we drive the 45 minutes to pick up their big sister for the weekend. It feels like forever since I saw her now that we don't get to see her every Wednesday like we used to. I hope she is enjoying her new home and new school.

Preemie Magazine

2007-01-16T18:37:00.000-06:00

I was curious whether the NICU at Cook Children's Hosptial, where Collin and Cyrus were taken care of in carried Preemie Magazine. I know that a NICU nurse or two checks in on this blog every now and then, so I wanted to leave this link they could fill out to have Preemie Magazine sent to their NICU. I wish that Preemie Magazine had been available when we were in the NICU, so if any other mom's of preemies please pass this information on to your local NICU. We all would have benefit from having it whether we just had our little ones, or are even getting ready for school. I know I have mentioned Preemie Magazine before, but it is such a great magazine... Every NICU and preemie parent should get it!

Houston, We Have a Problem

2007-01-14T13:29:00.000-06:00

Collin has a fever. It has gotten up to 101.5, it started last night and has lasted through to this afternoon. I called the hospital to find out if we will need to reschedule his EGD (or Upper GI) and is supposed to go home with a pH probe in the morning and am waiting to hear back from the on-call doctor. It is likely that we will not be going tomorrow. *sigh* I would really like to get this over with and depending on how soon Collin is rescheduled, will determine if he will stay off his reflux meds. I think he is likely teething because he has not other symptoms and has been chewing on everything he can gets his hands on lately. But I do not want to take any chances if he is sick. I will update this when I hear back from the doctor...

UPDATE: Well we are canceling his procedure under the recommendation of the on-call gastro Dr., and the weather. In Texas it doesn't snow, it ices, and right now we are in the middle of a cold (aka 30 degrees, feels like 19), rainy, icy mess that will likely be one of the few real cold spells of our winter. So I am slowly putting Collin back on his reflux meds, since he is sick he doesn't need that to contend with as well. I am also going to try to talk to our Gastro NP and find out if fever can be a side effect to being off the reflux meds. I will let everyone know how it all goes and what I find out. Until then, everyone, stay warm and dry! :P

BTW, Cyrus is doing fine. He had his first bath since surgery last night and I could take off the outer bandage from his incision. He whined and I kept telling him I was sorry and he would cry back "sorry!" but we got it off and then he was fine.

Collin just cruising along the furniture as he does so often now.

Cyrus was chillin' and telling me all about his favorite TV show.

Cyrus checks out his new PJs, they are a little too big for his legs....

Collin's Turn Monday

2007-01-13T14:24:00.000-06:00

Well Monday Collin will be taking his turn to the hospital, getting a nose spray to calm him down before they put him out, and then they will easily put in his IV, hopefully. I am so worried about the IV, I know he will be out but the last time he had an IV done it took 11 sticks to get a vein!!! And we will be going home with a tube down his nose to monitor his reflux for 24 hours. Luckily my parents are going to take care of Cyrus during this time so I only have to worry about one child pulling on the tube. Cyrus will be going over to Nana & Grandpa's Sunday night since we have to be at the hospital at 6:00 AM Monday morning. And I thought we had to be there uber early for Cyrus' surgery! In the old days (pre-children days) I would just stay up if I had somewhere to be that caused me to leave the house at 5:30 AM. Wow it really was two lifetimes ago, amazing how so much can change in so little time. Now I am a mother of two little miracle children! And there was a time when I thought I was never going to have children... :P

Bathtub Fun

2007-01-11T12:34:00.000-06:00

It was the night before Cyrus' surgery so I thought we would try something fun, no bathtub seats. Collin is not stable enough for bathing without the seat yet, so it was a one time thing for now, but they had a blast while it lasted!

Because everyone likes to see baby butts!

Collin is trying to reach across the tub and drag his
tub seat back into the bath. Cyrus is splashing in
the water, just the beginning of what would be
the Bathtub Splashing Fiasco of 2007. :P

Oh the water is getting deep now! Note that Cyrus is now on
the left side and Collin on the right. They never sat still.

The water got all the way across the room to the
bathroom door by the time they were done with this bath
and Mommy had to change her clothes lest she
catch a cold in her own bathroom! LOL

Surgery Smurgery!

2007-01-10T23:11:00.000-06:00

Well Cyrus must have known that he was having surgery early in the morning because he woke up ten minutes before my alarm was set to go off at 5:00 AM. So he watched his favorite TV show The Upside Down Show while I got ready to go and off we went in the wee hours of the morning to the hospital. Craig stayed home with Collin while my mother met me up at the hospital.

All went well... we got in on time, we were the first on our doctor's schedule, right in and right out. His hernia repair surgery was just over 20 minutes long. He had a pretty decent sized hernia and hydrosil, but it was easily stitched up and he was ready to go after about an hour and a half in the recovery room. We spent most of our time trying to get Cyrus to drink something so we could prove he was not nauseous and go home. But after trying all the things that normal kids like (juice, sprite, popsicles) we finally got him to drink from a sports water bottle from the vending machine.

And if you had seem him this afternoon you would have never known this boy had surgery just a few hours ago. He is doing great and the surgeon says that by tomorrow he will be feeling little to no pain (as long as he doesn't pull the incision) and the stitches will dissolve so all we need to do is set up a follow-up in three weeks to make sure every thing still looks good. I am happy, Cyrus is happy, hurray!

Oh and one other thing... I got the Medicaid thing settled yesterday afternoon while at Collin's food/speech rehabilitation evaluation. We got "emergency" Medicaid cards enabled and so that is cleared up! :) NO need to reschedule Collin's gastro appointment on Monday and our prescriptions for Cyrus' pain meds were covered today. Whew! I even got a direct line phone number to a woman I from children's Medicaid! How awesome is that!?!

oh yeah, a second thing... the evaluation for Collin was to replace the therapy from the college in Denton. It looks like we will start in the next 6-8 weeks depending on insurance blah blah blah. Collin will have Speech therapy twice a week! The NP who evaluated Collin gave him great reviews and said with intensive therapy she thinks he will be just fine. He rated 15 months old on the receptive scale, and 8 months old on the expressive scale in language which is right about where I expected. He understands far more than he can express but he tries really hard. *Deep Sigh* So after a whirl wind of emotion and drama things may be calming down for a little while and we can all take a rest. Excellent. :)

Cyrus was so excited about playing the toy area
before surgery, he must have been the happiest child there!

More toy playing in his gown and duck feet socks.

My brave little man still waking up from surgery in
the recovery room snuggling up with Nana.

Cyrus was all set to go and excited to be taking a
wagon to the car... To my carseat, driver!

Knocking on Wood

2007-01-06T23:35:00.000-06:00

Cyrus is getting better and has been fever free for 24 hours! Whew! Let's hope that he makes it through until Wednesday... knock, knock. :P In fact he and Collin have been very playful this weekend while their big sister has been here. We might need to reschedule Collin's Gastro procedure because of the Medicaid mix up. Technically we do have Medicaid right now but because of a computer glitch involving the new year that stated we didn't qualify, we are not receiving any of the Medicaid benefits. I have tried contacting the children's Medicaid office (and getting like nine different phone numbers of people who could not help and give me another number to call, etc. until I got to the official office who puts me on hold and I have yet to get a person) everyday last week that they were open and wasted hours of minutes on my phone without ever getting to talk to anyone who could help me. I AM SO FRUSTRATED!!!!

This means our medications are no longer covered, we will owe an additional $500 for Cyrus' surgery on Wednesday, and all our Dr. appointments/ procedures will cost us more upfront. Not an ideal time for a mix up, right after Christmas, but Cyrus needs the surgery more than Collin needs his procedure, so if we do not get this fixed by the end of next week we will have to reschedule Collin. I was going to reschedule Collin's rehab food evaluation but we would not get in until March... Decisions decisions and I want to do what is best for my children and hopefully what is financially viable for us. So if Collin has to wait until March, maybe that is what we have to do.

On a more positive note, Collin has been very vocal lately saying slowly and deliberately "ma-ma" and trying to make consonant sounds! He has also been wanting to walk assisted more too ( hold his hands); normally he resists and would lift his feet. But today he even took a few steps while holding only one hand! It was very exciting, and I am so proud of my big boy Collin! The therapists said that speech is related to walking and I am seeing improvement in both. And speaking of speech, Cyrus is talking constantly, although I have to translate it to others most of the time, but that is okay, I don't mind. :) He makes great associations, like calling a watch a clock. We just need to get some of the technical/business stuff settled so I can go back to focusing my energy on the boys. I feel like I have not been giving them my best lately and now that we are all relatively well we need to get back on schedule.

I apologize, I feel like all I do these days is complain, and sometimes I start to post and stop because I start just venting. My internal dialog isn't very positive, and I need to work on that. And but the way... the PostSecret guy is going to be in town (Grapevine, but its close to Fort Worth) the day after Cyrus' surgery. I am SO bummed out that I will not be able to go and get his latest books (and autograph them!) and listen to his lecture. But I cannot abandon my son the day after his surgery, and besides, Craig is still going to be at work when it starts anyway. :( But I will stop being so selfish and focus on the positive... It is a new year, and this stress too shall pass... all will be well again... ohmm.... :)

Cyrus is helping out Collin by pushing him on the tricycle,
and having a great time doing it too. Isn't that adorable?

Uh oh, Collin, you better steer that thing! You are about
to be pushed right into the box of diapers and wipes!!

Collin cuddles with Daddy on the couch after Daddy's long day at work.

Cyrus takes his turn with Daddy and Collin uses this as
an opportunity to try to steal Cyrus' blankie. Silly Collin...

Think Happy Thoughts

2007-01-03T22:52:00.000-06:00

Cyrus has had a fever for almost 24 hours now, as high as 102. I took him into the DR today under the recommendation of the phone nurse, and of course they found out he does not have strep and so they did nothing. I just do not need Cyrus getting sick and having to postpone his surgery on Wednesday. So everyone think happy thoughts that he does not get sick. We were going to a playdate with the multiples group tomorrow too. :( So much for that. Collin and Craig are fine and I am feeling better, so lets just keep Cyrus healthy!!!

Happy New Year!

2007-01-01T23:53:00.000-06:00

Welcome 2007! We are looking forward to this year, may each year get better than the last. Collin and Cyrus stayed up until 11:30 PM almost staying up until the ball dropped (again) Central Standard Time. I have high hopes for this year and I am optimistic that changes for the better will be coming.

I am feeling better, but my energy levels are still low. So to make up for my lack of conversation, here are bunches of fun pictures of the holiday season to enjoy!

Bringing in 2007 with a SNAP!
Cyrus hurt himself with the elastic on his hat moments later...

Collin was more interested in examining
the hat rather than wearing it.

Collin was obsessed with playing the piano
on Christmas. No really, he cried and cried
when we tore him away from it.

Cyrus was the Sit n Spin Master,
figuring out how to do it almost immediately.

Big sister Gaia opens her loot- tons of cool clothes!

Cyrus pops out of his gift from Santa, a puppet theater.

Collin and Cyrus watch the show Daddy puts on for them.
They both love playing with the puppets.

I just had to share how happy Collin was
to be inside the kitchen cabinet.

Collin and Cyrus express their artistic side with crayons.
Cyrus was bogarting the crayons and Collin kept eating them. :P