NO SURGERY!

I am so annoyed. After mentally preparing for Lord knows how long and taking all four kids to get her medically cleared yesterday and getting a flat tire on the way home with all the kids on a record breaking rainy day....... I get a call to say we were bumped from the OR schedule because it was over booked. How on earth can they bump a baby? It just pisses me off. Now they are hoping to get her on for next Thursday. I have to try and keep her away from people for another week. Avoid germs. Not an easy feat with three three year olds in preschool

My Mom leaves on Monday for vacation for 2 weeks so she won't be around to help like we planned for the time I was away. I just messes up the whole plan.

Oh, well, life goes on. I am hoping it we are healthy, ready and not overbooked for next week.

Thanks for all the well wishes. I really appreciate it. You have no idea.

Updates andthoughts

We have been a busy family lately. Lots of fun events starting with all the St Patrick's Day parades and festivities. It is really a wonderful time of year for our family. THe kids made a local paper again. We seem to get noticed for some reason. (I wonder why???)










We have also seen the Easter Bunny three times already!







No word yet from our school district regarding Cormac for next year. I have been waiting for about two weeks to hear back but nothing yet. We are covered until June 20th so we have some time.

Calleigh is having her lip repair surgery on Thursday April 1st. So, if you have some time for a few extra prayers, we could use them. It's weird because I know I have to fix her lip but in a way I feel like I am changing her face. It's just her, you know what I mean? When she smiles her whole face lights up and her lip is just the cutest thing I ever saw. I guess since I am her mom it doesn't phase me in the least. But I know her "new" smile will be just as beautiful and it will really help her in the long run.

Calleigh was also given another diagnosis last week. Duane Syndrome. Really? If any of you know what it is I will be pretty impressed. Just another strange anomoly to add to her medical history. I brought her to the pediatric ophthalmologist becasue I thougt her left eye seemed to turn in. Sometimes. Not always. It was not consistent. Well, her left eye is just dandy. Her right eye has Duane Syndrome. What does it mean? Well, she can see and has perfect vision. She physically cannot move her right eye to the right. So, right now, look straight ahead. Now, look to the right with JUST your eyes....... Ok, so your left eye moves toward your nose and your right eyes moves toward the outside of your right eye. Well, when Calleigh does this ONLY her left eye moves. Her right eye stays straight. It gives the appearance that her left eye is turning in but actually her right is is just staying straight. Does that make sense??? There is no cure and nothing they can do about it. It's not a muscle problem. The nerve that controls the muscle that moves her eye to the right is either misfiring or not firing at all.

I don't really know what to say about it. Seems like everytime something good happens (one of the holes in her heart has closed) we get some other odd diagnosis. She continues to amaze me with how damn happy she is all the time. She laughs and smiles all the time. She has made HUGE advances in the last two weeks with her motor skills. I think since we finally got her acid reflux under control she is eating more and feeling better. We have really been working with her to improve as well.

She can't sit up yet for a long time but has learned to put her palms down to catch herself. She is passing toys hand to hand and really playing with things now. I knew she was delayed because of her surgeries and not having the opportunity to be allowed to lay on her belly for almost 8 months because of her colostomy bag. But let me tell you since she has been spending time on her tummy and getting the opportunity to do things she is really flourishing. I know she will catch up before we know it. We just have to get past Thursday's surgery. Let's pray it's the last one for my lil angel.

The boys are all maniacs. Just wild. They love school. They love their play group and their play dates. They are going to be starting tennis and soccer, I think.

Language continues to develop for all three.

Here's a good story for you all to enjoy:
A speech pathologist came over the house to evaluate Calleigh because of her lip. The triplets were home and in strolls Cormac. The speech pathologist was having an entire conversation with him and I say to her "you know he's deaf, right?" She looked at me like I had 5 heads! She said "I am speechless, shocked and amazed" "He has perfect tone, pitch everything" Cormac's blonde curls cover his implants sometimes and you can't see them. I was so proud of him at that moment. I said "Show the lady you implants" He gladly pulled his hair back and showed her and says "these are my cochlear implants cause I'm deaf"!

That's all for now folks.

It's Official! I am a BEA Mentor.

The BEA is the Bionic Ear Assocation through Advanced Bionics. Advanced Bionics, for those of you that don't know, is the brand of implant Cormac uses. They have done so much for our family. When it came time to make a decision on which brand to chose for Cormac we went with Advanced Bionics because Frank and I felt their technology was the best.

Cormac was lucky enough to be enrolled in a bilateral study when it was his time to be implanted. This is why Cormac was able to receive bilateral simultaneous implants. Most kids don't get two at once. We were truly blessed.

I remember being told Cormac was deaf and feeling so lost in the world. I didn't even know at the time two hearing people could have a deaf child. I didn't even know what cochlear implant was. There was so much we didn't know. Now, three years later, well I have become very educated on implants, AV therapy, rights of children with hearing loss. You know, everything I ever need to know to make sure Cormac succeeds and gets all that he needs and is entitled to.

I think becoming a mentor for the BEA is just one small way to give back. If by talking to one Mom or Dad and letting them feel like things will be OK I will have helped. I remember feeling totally helpless when Cormac was a baby. I cried so many times over what his future would be. We know now that anything is possible in his future. Nothing will hold him back. There is nothing he cannot accomplish.

We owe all of this to the amazing technology that exists in the world we live in. Cochlear implants are amazing devices that give people not only the ability to hear but to also have their own voice. Cormac's voice is the sweetest voice I have ever heard. The things he says to me on a daily basis are miracles when it comes down to it. If he was born in a different generation he would not be singing songs all day. He would not be leading his class performances in his mainstream preschool.

We are forever thankful for Advanced Bionics and all the wonderfully, smart people who ever even thought it was possible to let deaf people hear....

If you want to view my profile click here

Family Fun Night

We are so looking forward to Family Fun Night at Summit Speech School. We will get to see lots of friends we haven't seen in a while. Cormac has been naming all of his old "peeps" from school. He is still pretty sure he will be terrified of the clown. I am going to agreew with him on that one! It's also a great time to talk to other parents. This year with Cormac aging out of intervention has left me a little lost for my loving group of friends at Summit Speech School. Yes, Cormac still receives itinerant services from SUmmit and WE LOVE IT but it's not the same as going there each week and cathing up with fellow moms and dads who really understand where you are coming from on a daily basis!

Hope to see lots of you there!

Jill, I got your message and I am so excited you will be there tonight. Sorry I couldn't call you back. Making phone calls with 4 kids under 3 just isn't easy these days!!!

Interesting Article

Kids with cochlear implants rank quality of life equal to normally hearing peers
ANIWednesday, February 24, 2010 22:00 IST Email


WASHINGTON: A new American research suggests that children with cochlear implants (CI) have the same quality of life (QOL) as their normally hearing (NH) peers.


A cochlear implant is an electronic device, which restores partial hearing to the deaf. Surgery is performed to implant it in the inner ear and then a device worn outside the ear activates it. The device does not make sound louder or clearer but bypasses damaged parts of the auditory system and directly stimulates the hearing nerve, enabling the deaf or severely hard of hearing individuals to receive sound.

Previous studies have indicated that deaf children feel less socially accepted, experience more difficulty in making friends, and show greater adjustment problems than their hearing peers.

However, the findings of the new research, a cross-sectional study of 88 families with CI children from 16 U.S. states, differ from traditional conclusions.

The study team used a generic QOL questionnaire. The subjects were divided by age of the child when they filled out the questionnaire - an 8-11-year-old group and a 12-16-year-old group.

Both parents and children filled out the QOL questionnaire, with the parents assessing their child. The study group was then compared to a control group of 1,501 NH children in fourth and eighth grades.

Results of the questionnaire showed that overall QOL did not differ between CI and NH groups. However, examination of individual subscales disclosed that 8-11-year-old CI children rate their QOL with family less positively than their NH peers.

Younger CI recipients rated overall QOL more positively than the older 12-16-year-old CI group. But, the authors believe that this could be a reflection of standard adolescent behaviour.

By and large QOL showed a significant inverse association with age at implantation, and a significant positive correlation with duration of CI use in the 12-16-year-old group.

The authors say that even though prior studies have appraised QOL in CI children, this study adds additional perspective to the literature, as it combines assessments by the actual CI recipients and parents, and it maps the results in context with NH children.

The research also demonstrates that parents proved to be reliable reporters for their children in areas where they could observe and participate.

The authors write: "For profoundly deaf children who regularly use a cochlear implant, feelings about life overall are no better or worse than their hearing peers. These findings indicate that cochlear implantation has a positive effect on certain psycho-social domains."

The study has appeared in the February 2010 issue of Otolaryngology - Head and Neck Surgery


I think I have to agree with this article. Our house is sort of a daily study in the lives of children the same age, with one who happens to be deaf. His quality of life, in my opinion, is no different than that of his brothers. I think if you asked him he would feel the same. He is just one of the kids. No different than anyone else. I hope as Cormac grows older he always feels so comfortable in his own skin. Just yesterday a teacher at his school (not his teacher) approached me to tell me she has never seen a child with such a "zest for life" who wanted to learn everything and who clearly is "running the show" and "the leader of the pack". (all ina good way) Nothing could make a mom feel better.

Melissa, thanks for your comment on the lip reading post. I agree, Cormac is part of a new generation of deaf kids. They are paving the way for future children just like you did many years ago. I think it's hard for different generations to fully comprehend these kids don't actually need any further assistance than their implants. Truly, an amazing experience I myself find hard to believe at times BUT we are living it every day.

Response to Lip Reading Post

Anonymous wrote:
If he is "hearing" with his cochlear, you don't need to cover your lips. Do hearing people do that with their hearing children?

If not, then there's no need to. If he really struggle to listen to the point that you have to cover your mouth to teach him, Just stick with sign language. People in my generation of hearing aids did the same thing to us. They covered their lips so we could be trained to use our hearing aids. It worked in the short-term if we are really focus on it, but in the long term, it doesn't work.

Cormac in no way needs to lip read. It;s not like we walk around with our mouths covered. But when we are testing him we like to make sure he isn't "cheating" since he is such a good lip reader. Parents of those with hearing children don't have the same issues. They KNOW their children are using their hearing because a hearing child doesnt lip read. He uses his hearing to have conversations. He uses his hearing alone in a mainstream preschool and doesn't miss a trick.

Barb:
I have heard of cued speech but haven't looked into to much. It sounds like an option. We so rarely need any assistance in communicating it hasn't come up to often.

Melanie:
Venemous... I know. I honestly can't believe the things he remembers. He is like a sponge. Your Peas sounds just like him :)

Lip Reading

When Cormac was implanted we chose for him to be educated in an oral only school. The school he received services from birth to three years old did not teach sign language or any other form of communication besides listening and speaking like his typical hearing peers. That said, Cormac knew tons of signs before he was implanted and still remembers them. I would say he knows about 200 or more signs. When he first started talking he would sign the word as he tried to say it. I thought it was so helpful during this process. Colin and Ciaran also did sign before they were verbal. It was so cute to see them all signing "more" or "cookie". I noticed as Cormac became more verbal he started dropping his signs because he just didn't need them any longer. I thought once he was really verbal we could always go back and learn more since he is still deaf and without his implants I feel like I need a way to communicate with him. We still want to learn but I have found Cormac has an amazing ability to lip read. I mean you can have an entire conversation with him when he is not wearing his implants and he answers you back. I don't understand how on Earth people acquire this skill. There are times in the bath tub Frank will say "he can't be deaf" knowing full well he is deaf.

Now, for three years we made sure he didn't lip read when we talked to him. We wanted to make sure he used his hearing and didn't "cheat" by lip reading. We would cover our mouths when we spoke so he couldn't see our lips but he still can do it. I now he doesn't rely on it but it sure comes in handy. When we are in very noisy situations he can still understand me (Ciaran and Colin wont because if it's too loud and they can't hear me they can't lip read). When he is in water it is awesome.

I will never understand this ability. I would love to hear from others about their experiences with their children or with their own lip reading in life. How do you do it??? This kid never gets it wrong.

On another note, we are heading into NYC for a mapping tomorrow. Just in time because the last few days Cormac has been acting like he isn't hearing as well as normal. Lots of "what did you say?" Not sure what is going on but with some fine tuning tomorrow I have full confidence he will be back to his old self. I took the opportunity to work with him on his confidence to ask others to repeat themselves if he misses something. This is especially important in the class room and will be more important as he gets older. He needs to be able to advocate for himself and never feel embarrassed to ask someone to repeat themselves. So, I taught him to say "excuse me, I didn't hear you. Can you please repeat that again?" Seems like it's working because he said it to me quite a few times this week.

Let's see as for language?? What's Cormac's latest? He told me Black widow spiders are venomous. I asked what does venomous mean? He says "It's poison, Mommy.". He is also telling everyone about Tornadoes. He says "they are funnel clouds" . My sister watched the triplets this morning for a while so I could take Calleigh to the dr and she took them to a class at the Community Center. She said he was basically running the class. They asked them to pretend to be their favorite animal. Cormac's was a penguin and a frog. He told them frogs eat insects with their tongues. SHe basically said he didn't stop talking the entire time right along with the other two nuts I am raising.

But the best story of the week....
Cormac goes into NYC every three months for a mapping. I take him alone because it's just easier. He has referred to NYC as "my city" for as long as I can remember. Whenever we see the skyline he says "look at my city". Ciaran and Colin even refer to it as "cormac's city". He asked if we could bring his brothers and sister with him tomorrow. I said sure. Then he said to Ciaran and Colin "Hey, Ciaran and Colin, do you know why I want to bring you to "my city"? Because I just love you guys!" It was one of the sweetest moments ever. The look on his face was so sincere it made me cry. He is beyond excited to go tomorrow.

The Happiest Baby on the Planet

Through it all, (Hirshprung's Disease, two surgeries, Kidney reflux, acid reflux, two holes in her heart, incomplete lip I am sure I forgot something) this is the face I see every day. This is how she chooses to deal with one thing after another. I think we could all learn from her!

She is an amazing baby and oh, so happy. She smiles through everything. Every procedure, every doctor's visit. (4 this week alone) My heart fills with joy each time I look at her. When she laughs like that it actually makes me cry. It's a new concept I had to explain to the boys. They now say "Mom, are you so happy you are going to cry?" She has had a rough start but she pushes through and I predict by the time she turns one she will be all "fixed" up. We are fortunate all her issues are fixable. No long term issues we know of. But, man, it has been a tough 8 months. Her lip repair should be in the next month or so once the surgeons can coordinate their schedules.

Keep smiling and laughing....

Yesterday was an interesting day...

The day started off on the wrong note. I should have just stayed home but I didn't. We went to our usual Thursday play date. Apparently, someone came into my house overnight and replaced my lovely children with satan's spawn because they were acting like little devils. No one would listen and they were too wild. I actually packed them up and was making them leave before lunch was served. This caused near hysteria but I am not one to give in and I think the only way they learn a lesson is if you follow through. My sister was there and begged me to give them another chance and I caved. (very unlike me) They did get better after that because they really thought I was making them leave. They ate like they never ate before. Even Ciaran.

Next we were headed to Calleigh's eight month well check visit. I was bringing all the kids with me. Normally, I wouldn't be worried. They are very good but seeing how they were not in the best of moods I was a little nervous. All three of them fell asleep in the car in under 5 minutes. Not that it excuses their behavior but it makes it more understandable. It was only 1 in the afternoon and they were unconscious.

I drive around while they sleep and arrive at the doctor's office. Colin wakes up from his nap and says "Mom, where are my extra pants?" I say "we don't have any extra pants". He says "I think I had a little accident while I was sleeping". I undo his car seat and am immediately overwhelmed by the smell of poop. It was everywhere. Down his legs up his back in his seat on his coat. Now, I have theree other sleeping children in the car. No clean clothes and I have 1 minute before my appointment. Colin is now crying because he is upset he had an accident. I felt so bad for him because he was upset. My sister lives about 2 blocks from the doctor so I call her and she luckily answered the phone (THAT NEVER HAPPENS!!) She came over and brought me some sweat pants. It took my an ENTIRE brand new container of wipes to get all the poop off of him.

Now I unload the others after waking them. At this point I realize Frank didn't put the stroller back in the car so I am strollerless.

I will say to my credit I was still smiling at this point. I get them all in the office. The boys redeemed themselves and behaved like angels in the office. Of course I did give them some Valentine candy while they waited but it worked. Colin pooped two more times in the doctors. Calleigh now poops every 20 minutes since the colostomy reversal so I changed her about 3 times in the office. I am hoping she gets better quickly and her body realizes she only has 2/3 of her colon left.

I get them home and Ciaran and Cormac both have skid marks in their underwear. At this point I am so overwhelmed by the smell I think it is all over me. In the bath go the boys. Ah, a moment of lovely smelling children. No more pooping since.

I am guessing it's because they ate way too many pears the day before. I totally forgot pears make you poop. They love pears and had a pear feast the day before. I have learned my lesson!

Today has got to be easier, right???

By far one of THE BEST DAYS ever....

Yesterday became one of the best days. After being snowed in for two days we ventured out of the house. We had an awesome play date with our BFF's Kennedy and Jack. Cristina, their mom, is always a great hostess. We followed up by going taking Calleigh to a follow dermatology appointment for her raging diaper rash. Now, my three were just perfect angels at the appointment despite the fact the doctor was NOT friendly at all to the boys. But the good news? We have FINALLY turned the corner on this horrible hiney situation. Calleigh's butt no longer looks like raw chopped meat. This second medicine is working. Just reinforces my belief we know what is best for our kids. I told the Dr. the first medicine was making things worse. I feel so relieved for her. She no longer screams in pain anytime she goes the bathroom. And a bonus she has stared sleeping through the night again!!! She was sleeping before her surgery but began getting up several times a night again. Last night, she slept from 8-7! We did wake her at 12 for a diaper change to avoid her rash getting worse but still. HUGE IMPROVEMENT!!

On the way home from the doctors it was nap time. The boys didn't really get to enjoy the snow too much and for all the have played in it they have never been sledding. Only on a tiny hill on our lawn. I made the executive decision to skip nap and wait for Frank to come home. We headed down to Memorial Park and did some serious sleigh riding! Can you say NO FEAR???? THese boys were flying down this giant hill. They were so over the top happy to have this experience. Not to mention, Frank was going with them. The looks on their faces was priceless. We had Calleigh with us all bundled up so I stayed with her. I did get to go downt he hill once. I rode with Cormac and I will never forget it. I swear, they must have went 100 times. Each time pulling the sled up behind them and walking up this giant hill.

After about 2 hours we had to call it quits because it was starting to get dark. THe boys cooperated and came willingly to the car. Colin asked for an "indoor picnic" for dinner. I obliged and we ate our BBQ chicken, noodles and veggies on a blanket on the living room floor. I even busted out the picnic basket.

The boys were exhausted and went to sleep by 8pm.

All in all just a wonderful day. Days like today make me really remember what life is all about. It's all about the moments you will remember forever. It's all about spending some time with the most important people in your life. It's about not caring if someone spilled purple apple sauce on the rug. or BBQ sauce on the floor. Who cares. In the long run I will remember my family sitting together in the living room having and "indoor picnic" after the most memorable first time sledding. And as a bonus on the way to the drive to the park Cormac told me "Mommy, a chameleion is a type of lizard that changes colors". Now come on?

Nothing earth shattering really happened but man, it was a great day.







Our indoor picnic

We are still here!

It's been a long time. But we are still here. I feel like i have been so neglectful of the blog lately. I swear we are just so busy. It seems I have no time to even breathe.

So, let me just give a quick run down:

Calleigh is doing well. She hates to poop but is dealing with it. She has the worst diaper rash you have ever seen. No kidding. We are seeing a dermatologist for it. This week we had 4 doctors appts for Calleigh in 4 days. Poor little girl. Luckily, they are mostly follow up visits. We are hoping to get her hiney under control soon but since she poops about 3 times an hour it's hard. Eventually, her body will realize she had 1/3 of her colon removed and will adjust and she won't be a pooping machine! We followed up with an ENT to make sure her breathing issues after surgery were just situational (pain meds/fluids/swelling from intubation) and he strongly feels that's what happened. He scoped down her nose and found nothing except to confirm she really does have SEVERE acid reflux. But we knew that already and she is already on medication. Somehow, she manages to be the happiest child I have ever met. Her smile is BY FAR the best smile I have ever seen. Her dimples are so cute you can't even describe them. She warms my heart every time I look at her.

Now for the triplets. What can I say? They are in a good place. They love school. They love their weekly play date. They love to play. They love to yell. They love to run around like wild maniacs. I would say the three's have been the hardest of all so far. Three very different personalities. Three wild imaginations running wild each day. Tons of laughing and playing along with fighting. They really don't fight to much with each other but they love to challenge me. Seems like it's the favorite past time at the moment. Most days are great. But the days that are not great are usually a disaster. Those are days we are in the house all day. If we are out there is never an issue. Nothing. Nada. Doesn't matter where we are they just love being out.

I think Colin is starting to read. He is sounding out words. He is spelling lots of words. He really is a smart cookie.

Ciaran has really made some big leaps lately. He seemed to have the hardest time learning his letters and sounds but he wizzes through them now. He is showing more of an interest in learning too. He still continues to want me to read to him the most.

Cormac is doing awesome. He too seems to be starting to learn to read. He can tell you what any word starts with. He doesn't miss a trick. He can tell you EVERYTHING that happens at school. He will tell you who the leader of the day was and what they did. He can tell you who sat next to him and his brothers. He thrives at school. As we start to approach the triplets 4th birthday it means we have to write another IEP. We need it in place by April 6th. Not a lot of time. Guess I have to start contacting the school district.

We are in the midst of a big snow storm. Lot's of language: blizzard, gusting winds, white out. Just last night Cormac told me bears hibernate in a cave. Hibernate? that's a pretty decent word for a three year old.

We continue to tell stories each night before bed. The stories are getting longer and more detailed. The language being used gets more complex and the details are very descriptive.

That's it for today. Off to make pancakes and then we are off to a big fun snow play date!

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.

MERRY CHRISTMAS FROM THE LAWRENCE FAMILY!

We hope you all have a happy, healthy and safe Holiday Season.

Love,

The Lawrence Family

(This was our Christmas card picture this year)

No Surgery

Calleigh's surgery did not take place on Monday. She is fine and dandy but my pediatrician and surgeon have decided they want it performed at a different hospital. Fine by me. So, we will wait until after the holidays. I was reminded today by a friend that I did not update the blog! The holidays are quickly approaching and as you can imagine we are super busy. Everyone is great and looking forward to the bearded man's arrival.

We had a major milestone.....BIG BOY BEDS!!! Today is our first day in them. So far, so good. They took a two hour nap this afternoon and are asleep already for the night and have been for a while. They were totally excited. I was strangely saddened by this event. Seems to be the end of such a major part of our lives. Taking down those three cribs seemed like saying good bye to my babies. I took some pics and videos and will post soon.