Oh what a night..

You remember that song? "Late December back in '63 what a very special time for me" Well, I was singing that song the other morning for no reason what so ever. I don't even care for it. Cormac hears me and says "Hey, mom, it's 2010 NOT 1963" How on earth did this child realized "'63" meant the year 1963? It totally stumped me for sure. He has only been alive since 2006 so it's not like he knows the years prior. Yet another one I will never understand.

Here is Cormac saying his prayer they say before eating. He was acting a little goofy in it :)




Here is their Pledge. When they say it alone they say it much better but as a group some things get muddled. But all in all pretty darn good.



Here's Cormac just telling a story. Don't mind all the spackle on the walls..we are under construction!



Calleigh is doing much better. Other than the fact that she screams crying every time she goes to the bathroom. I am told this will get better. She has internal stitches causing pain. Along with a killer diaper rash. None like I have ever seen before. It's hard to get out of the house with her because once she does go to the bathroom the best thing is a warm bath. Can't really do that out in public.

Thanks for all the well wishes for Calleigh. She certainly needed them. Our family truly appreciates it.

The whole story...

Here's the deal on Calleigh. Let's start by saying the surgery to reverse her colostomy was a complete success. She is pooping like a champ even though she is not to thrilled about it. Her precious little tush has never been exposed to poop before so to say she has a diaper rash is an understatement. It's a full time job managing her tiney hiney!

Calleigh went into the hospital on Thursday morning. She was not allowed to eat for 24 hours prior to surgery. Yes, you read that correctly. 24 hours. Because the surgery was on her colon it needed to be empty. I also had to give her the drink people take prior to a colonoscopy to totally empty her. Poor little girl. She handled it like a champ. Never cried the entire time. She was allowed apple juice and she loved it. Kept smacking her lips together for more.

The surgery took about 3 1/2 hours. When I saw her after surgery she was already off the vent and just receiving Oxygen. Perfect. She was brought to the PICU for recovery. By Friday, she was so swollen with fluids she was unrecognizable. Between the IV fluids and the after effects if colon surgery (lots of fluids) she could not even open her eyes from so much Edema. By Saturday, she was worse and her breathing started to be labored. At one point on Saturday she stopped breathing because she just couldn't get air. They bagged her twice to bring her back. The worst day of my life. The fear you feel cannot be put into words. It changes you forever. Not sure I will ever recover from seeing every doctor and nurse from the whole unit around my daugter's bedside trying to get her to breathe. Hopefully, I will never see it again. There was talk of intubating her but they wanted to avoid it if possible. The thought process was once she started passing all the fluids her swelling would go down and she would be back to her old self. She was taking long to expel the extra fluids. By Sunday they gave her a dose of Lasix. Within hours of the shot she looked almost back to normal. By the end of the days she was opening her eyes. She was still on the CPAP machine to help her breathe.

She still had not eaten at this point or pooped. Boy, were we waiting for poop. I never knew one could be so excited for poop! Of course, I came home for about an hour on Monday and she pooped while Frank was there! By Monday night they let me try and feed her 2 oz of food. We put her on just a nasal cannula of Oxygen while she ate and she held her own. By Tuesday morning she was only on the cannula and they took her off completely to see how she did. Well, she did fine and after 24 hours of no apnea episodes we were allowed to come home on Wednedday.

We have been home since Wednesday afternoon and the boys are just starting to get over the fact I was gone for so many days. They keep asking me if I am leaving again. Colin at one point cried to me and said "you and Calleigh can't stay at the hospital forever". It was a tough week for the whole family.

On a happier note the boys think it's wonderful Calleigh poop now come out of her hiney! The fact that my three kids all said to me on different occasions "is Calleigh done with her surgery? Is her stoma gone? Does she poop like us now?" Is comical and sad at the same time. I wish they didn't need to know all those words but am so happy they have such advanced language :) Not many three year olds use the words "colostomy reversal", "stoma", "surgery" . And they actually understand the words. They know their meaning.

So, that's the whole saga. Now we are just in recovery mode.

Quick update

We are home and Calleigh is doing well. We wound up in the hospital longer than expected and things got a little scary for a while. I will give the whole scoop when I have more time. As you can imagine it has been a long week for our whole family. The boys were upset Calleigh and I were gone so long and their routine was a little screwed up. Luckily, kids are resilient. Today, they are their usual selves raising hell and up to crazy stuff. All while mommy is working on about 6 hours sleep in a week.........

Pray for Calleigh

Calleigh is having her surgery today at 11:45am. Please keep her in your prayers. She has been such a trooper the past 24 hours. I can't believe she has yet to cry and has not been allowed to have any food for 20 hours. She has had pedialyte and apparently likes it. SHe smacks her little lips together when you take out the bottle. So cute. She even drank the yucky drink she had to drink to empty out her colon. Three does at over 4 oz a piece. God love her!

I am hoping all goes smoothly and she will be rid of her colostomy bag as of today. She is such a little ray of sunshine and we are so blessed to have her.

Alexander Graham Bell 2010 Convention

Any of my fellow moms to deaf/hoh planning on attending the convention? I was thinking of trying to get there in June. It's in Florida this year. I have never attended but am particularly interested in receiving their Parent Advocacy Training. It sounds like a wonderful opportunity. I was thinking it would be a wonderful opportunity to meet some of my blogger friends in person. They also have classes for the kids so a great opportunity for the kids to be around others who are in the same or similar situation.

If you are interested in going maybe we could coordinate a group so we will know some others when we arrive.

Imaginations

Three year olds have a very powerful tool. It's their own little minds. Their ability to use their imaginations is endless if given the opportunity. On days when we are home all day it would be easier to just put the TV on all day but who says things should be easy? I like to see what they come up with on their own. Knowing I won't put on the TV they just go off on their own and play. They don't need fancy toys or electronics. They just need themselves. (well, and a few props!)

Today, I listened as Princess Ariel(Cormac dressed in his Ariel costume) turned Colin into Prince Charming and Ciaran was Prince Ciaran. They played for over an hour running from room to room. (or castle to castle) The two Princes built castles out of blankets and chairs. Ciaran told Cormac (ariel) "I love you so much, Princess Ariel" to which he repsonded "I love you too can we live in a castle together with Prince Charming (Colin). The language being used between the three of them was astounding. Words I didn't know they knew. They worked/played together so nicely. At some point Ciaran was no longer a Prince and Princess Ariel rescued Prince Charming from "danger". Cormac used the words rescue and danger.

I just love it. I love how they play nice together. I love how they use their words and challenge their minds. I love watching the stories unfold in their little heads.

Every night at bed time we all go into their room. Everyone takes a turn telling their own story. I can remember a time when I thought this would never happen for Cormac. I remember being told how important it was for him to be able to follow a sequence of events (first this happened, then this happened and next this happened) This was hard for him at first. But the detailed stories told at bed time show me he fully understands how to tell a story. How it should have a beginning middle and an end. They all do this. They all tell similar stories. Usually, some one is in some sort of "scary forest or something" and then saved by a Super Hero. The stories get more detailed and complicated each night. Last night, I actually had to cut Cormac off because he just kept telling another story and was cleary just trying to avoid sleeping! I couldn't believe my own words when I said "Cormac, you can't tell anymore stories. You have to STOP talking and go to sleep!" Really, did I just tell him to STOP???? What has happened? The world must be upside down! But yes, I did tell him to stop. He proceeded to tell me "I was the most beautiful princess mommy in the whole wide world. He also told me I had beautiful hair and was his favorite person" For some reason I didn't tell him to stop talking then......

A tea kettle

Today I put on the tea kettle. I was up in my room with Cormac and he was wathcing TV. We live in a split level house. We were in last bedroom upstairs. The kitchen is down the hall and down 5 stairs. He says "oh, mommy, the tea is ready. I hear the kettle". Still can't believe what he hears. And trust me it was NOT quiet in our house.

Ok, while I am writing this Cormac just said "Mommy, you're a maniac!" Don't know what he is talking about!

I really want to start some sort of group for parents of kids with implants. I just don't know where to start. I talk to lots of moms of newly diagnosed kids who are sent my way from NYU or Summit Speech School. I would love to be in contact with parents of kids who are older than Cormac so I can have an idea of what to expect. I really don't have any free time but I would make the time to socialize with other families like us. It doesn't have to be anything all the time. Maybe a bimonthly get together for anyone who can make it. Just to bounce ideas off each other. Talk about our kids educations and what their school districts are like. Anyone have any suggestions on how to start it? Where to begin? I am in Northern NJ.

Hope you all had a wonderful holiday season. We had the best Christmas yet. The kids were thrilled. New Years Eve is no biggie to us. It's always been amateur night so we never really got into it. Frank and I did stay up for the New Year but it was only because I got up to feed Calleigh at 11:30pm. Other than that we probably would have slept through it!

Calleigh's surgery is rescheduled for January 14th. I am hoping it goes off this time. Let's hope the other three monkeys stay germ free and don't bring home any yuckies from preschool this week. I am tempted to keep them home but they have been on Christmas break and we ALL need them to go back to school. :)

I am hating winter right about now. It is so cold and there is nothing to do with the kids. I hate being home all day with them because they get bored.