Tuesday, June 05, 2007

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.


Kelli in the Mirror said...

Hey! Glad to see you back. I keep meaning to call you, but something always happens. Email is usually more efficient for me, but I don't think I have your address... I need it please!

Anonymous said...

Your boys are just adorable:) I have a friend that has identical twin girls. They are 4 mths old, and healthy. They are so much work, I can't imagine how you have done it. Be proud of yourself momma, you are doing a great job!
(Ange from NB Canada)

Loni said...

Welcome Back!
You are a wonderful Momma, and I am so proud of you for taking care of yourself and your boys the way you do every single day. :)

Nancy said...

The ankle SMO? Does he have tight ankles or loose ones? We hvae tight ones and I wonder somtimes if it will cause him to not walk. I can't convince him to do it now so I was just curious/

Nancy Brown said...

I am afraid of shunts to. I hate the feeling of thinking its his shunt when he pukes or has something wrong. We are on shunt 2 in 2 years.. so we are in the same boat. We still take bottles, He will feed himself just not with a fork or a spoon. He is picky as could be. Who knew? Very cute and I hope they start "doing" all by themselves!!

Anonymous said...

You have beautiful children! Thanks for sharing your blessings.

Korrina said...

Your boys are beautiful, an inspiration for my micro preemie twin girls. Find us at www.bitsandpiecesofme.typepad.com

Andrea Ball said...

Hi --

I hope I am not intruding, but I found you on the web. I'm a
newspaper reporter working on a large project about prematurity. I was
hoping you would consider participating in the below questionnaire,
sending it out to as many people as possible or putting it on
your blog/website.

I understand if you can't, but I appreciate your consideration.Thanks!

Andrea Ball

(reporter and mom to 22 and 24 weekers)

Dear Preemie Parent:

Hi. My name is Andrea Ball and I am a reporter with the Austin
American-Statesman in Austin, Texas.

I am writing a large story about the mental health effects of premature
birth on families. This story is funded in large part by the Rosalynn
Carter Mental Health Journalism Fellowship Program.

The main story follows a family with three premature children. We look at
their childrens' hospital stay, their challenges at home, the effects on
the parents' marriage and the financial problems caused by medical costs.
We explore the issues of depression, anxiety and post traumatic stress
disorder. We are also looking at the long-term effects on prematurity on
the child.

As part of this, the newspaper would like an online presence of parents who
have been through all this.

If you are interested, please answer the following questions and email them
to rquigley@statesman.com and aball@statesman.com>

Please make sure you put the words PREEMIE PROJECT in the subject line so we
are sure to see it. Here's what we need:

Your name

Your child's name

Your city and state

Hospital photos and current photos of your child.

If you have videos of your child on YouTube, please send us a link.

Then, please answer these questions (there is no word limit):

What were the circumstances of your premature birth and at what gestation
did the baby arrive?

What was your NICU experience?

What has been your experience since your child came home?

Please discuss any mental health effects you or your child have experienced
as a result of prematurity (depression, anxiety, post traumatic stress
disorder, marital stress, OCD, bipolar disorder)

Please discuss resources you used to get your family through the
stressful/emotional part of this time. (counselors, spiritual leaders, etc)

Thank you so much for your help. Your kindness is greatly appreciated.

Andrea Ball

P.S. If you would like to learn more about my work, you can see me here:


Billie said...

It's been another two months!

How are the boys? How are you?