Any bright ideas?

Calleigh is doing phenonenal. Her lip looks just amazing. It gets better everyday. It's only been two weeks. She is just moving along. We also got some more good news. She has Kidney reflux. It was grade 3 out of 5. This would indicate surgery would be needed to correct it. We just went yesterday for her ultrasounds of her kidneys and bladder. Her left kidney is showing NO reflux and her right kidney is only showing trace. It could not have been better news. Calleigh doesn't really catch breaks it seems. If it can go wrong it usually does with her. But she finally caught a break! It seems the reflux is correctly itself. Now, we just have to get her acid reflux gone and she will be good to go! I am assuming she will come off the daily antibiotic she has been on to prevent kidney infection but we will wait to see what the doctor says next week.

She has also made great leaps in her motor skills. She can sit on her own for a while. She can roll over in both directions. She is totally making huge strides. To put in in perspective. A month ago she was showing the skills of a 4-5 month old in her motor skills (she was 8 months at the time). Today she is at about 7-9 months and she is 10 months old. I realize she just wasn't given the opportunity to develop her motor skills due to her surgeries and not having access to belly time and sitting in a chair. My underlying fear that she has something else going on with her has seemed to ease. I still worry but now when I look at her I see she is just catching up. She is so smart and alert. She just had a hard time teaching her body to do what she wants it to do. Her body was focused on healing for so long that her development was secondary. Now that her body is healing it can focus on developing and she is flourishing. :)

I am looking for some advice and ideas about Cormac for the summer. He is in school until June 20th. I am not sure what services he will receive over the summer because I have yet to hear back from the school district. Considering they just shot down the school budget I can just imagine where the cuts will come. It's so frustrating when a town doesn't put education first. The future of your town and country depends on the children in your town. How can people NOT understand this? So aggravating.

Anyway, I need some inspiration. I need some fun activities I can do with all the boys that focus on language and hearing. I am in a rut and could use some bright ideas from all you wonderful folks. I use The listening room ideas. But with the nice weather we are outdoors much more.

Cormac has decided he wants to read. We were playing blocks and building towers and the blocks have letters on them. I put together the word POT. I said what does this say? He goes PPP OOO TTTT , you know made the sound each letter makes and then said "Oh, pot!" I switched the P to H and he did it again and said Hot. I am pretty sure this is the start of reading, right?? We read ALOT in this house. I mean sometimes like 20 books a day! I guess it is paying off. Lots more to update and I will when I can.

I am leaving for California a week from today....

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.

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.

Christmas is coming

I started this post right around Thanksgiving and never remembered to finish and publish it. The words that surround Holidays are so awesome. In normal conversations my children used the word waddle (as in on a Turkey's neck!),pilgrims, indians and teepee. I was quickly told that a Teepee was a kind of house an Indian lived in. We also used the word Feast. Celebration is another word coming up in our talks. I am in awe of all the words my kids know. I can't believe how much they over hear and are able to repeat. (not always so good :) ) Cormac also can do this and picks up tons of incidental language. A big worry of us moms to kids with hearing loss. He seems to know lots of words that are not "taught" to him. Music to my ears!

I have to tell this story because it was so hilarious. We were playing in the play kitchen. We made menus and the boys were taking my order. It was a great time. They told me all the things they wanted to serve. We had a food menu and a dessert menu. I laminated them. The boys deicided to name their restaurant "THe Lawrence Brothers Diner", cute right? Well, about an hour later, Cormac walks up to me hands me a menu and says "Hey Mommy, What do you want from "The Lawrence Brothers Vaginer"! Oh, how I laughed.

We had our fist snowfall this weekend. It was beautiful and the boys were just in awe. We were out later than normal at my sister's house and when we got him it was dark and they were running on the lawn yelling "I LOVE SNOW". It was only about 2-3 inches so not much but I thought to myself, how wonderful it is to look at the world through the eyes of a three year old. When's the last time I just thought "wow, look how beautiful the snow is" without thinking in the back of my head, "ugh, snow, now starts the mess. The shoveling. All the yucky stuff that goes along with it" Oh, to be three again and so unaware of the real world! I wish I could bottle their enthusiasm for life.







Christmas is quickly approaching. We have had three visits to Santa so far and the requests are still the same. I am so happy no one is afraid of Santa. They are in love with him. Another holiday and tons of language! Tree lighting, tinsel, trimming the tree, decorations, lights, garland, mistletoe, jolly. THe words are endless. Not to mention snow, flurries, flakes, blizzard, storm. All the weather words of the season.

We went to the tree lighting in town last night. It was the first time we made it to it since we lived here. Fun and short. Good for us with the four kids. Just enough to get them excited and happy but not cold and complaining!



Calleigh is having surgery to reverse her colostomy on Monday (12/14) so keep her in your thoughts and prayers. I am terrified and thrilled at the same moment. To have her without the colostomy is going to be wonderful. But sending her in for a pretty complicated, several hour long surgery, well is scares the shit out of me. Not to mention she can't eat after Saturday at midnight, yes SATURDAY, and her surgery isn't until Monday morning. I also have to empty her colon on Sunday so she will be have to drink somthing similar to what people drink before a colonoscopy. This poor little girl has no idea why I will be torturing her. SHe will be starving and miserable. We can give her pedialyte. But that is all. It took us forever to get the little bugger to 13 pounds and she will probably lose it all after this experience. She will be in the hosptial 3-5 days depending on her recovery. KNowing Calleigh and her track record, she will be in 6 days! Let's hope not but if you remember she didn't want to leave the NICU.