Way to go Jade!

Yesterday Jade competed in her first climbing competition and did a GREAT job!   She even had her own little cheering section  :)

Coping skills....Pretend ear plugs

I disovered a new coping technique to teach my daughter to help in managing her reaction to her brother's meltdowns.....   Pretend Ear Plugs.

On Saturday, Kai was in one of his meltdown-moods.    He had a "make up" session with Karen, one of his ABA therapists, and seemed to struggle with virtually everything...focusing, communicating, mood regulation, etc..   It was a sort of pseudo-regression type of day with a ton of stimmy-behavior.  

I told Jade that she and I would make a special treat... ice cream made from snow.   Well, unfortunately our little guy had trouble allowing us to enjoy this little interaction, and ventured down misery lane for an hour or so--featuring a combination of his "I am miserable and can't do anything...please give into me" cry and his feet-stomping, protesting, all-out tantrum type of cry.  

I was very proud of myself for maintaining my calm despite all of the drama, and used this experience as a learning opportunity for my daughter (who is learning how to ignore some of Kai's inappropriate behaviors, rather than inadvertently feeding into them.)    I showed Jade my pretend ear plugs, and shared that I sometimes have to wear them when Kai has his tantrums.  Then I asked if she wanted a pair.  "Yes please"  she said.  "Could I have a pretend pink pair?"  

Believe it or not, we were successful in continuing to enjoy our little project together, and were able to enjoy tasting it when we finished.   By the end of his meltdown, Kai was informed that he would be able to enjoy some snow ice-cream after dinner...given the stipulation that he would be wearing his happy face.   He agreed, and promptly settled into a 2 hour nap.    

I am always amazed at the miracle of nap time.    Following his nap Kai was a completely different little guy, showing his happy face and much more able to interact appropriately.    He did receive his snow-ice cream reward  :)   

And...my daughter and I were able to effectively tune out a meltdown by wearing our pretend ear plugs.    

(BTW, my husband has a very effective set of pretend ear plugs that I wish I could borrow.   They must be the industrial-grade kind!) 

Snow Ice Cream Recipe: 

1 gallon of freshly fallen snow

1 cup of regular sugar

2 cups of milk

2 tablespoons of vanilla extract

food coloring (optional)

Gradually mix all of the ingredients together, slowly adding as much milk is needed to achieve desired consistency.     Enjoy immediately (or freeze until after dinner  :)

Hoppin' today

This Wednesday I'm joining in on a new Blog Hop.....  Tara at Sticky Fingers has hosted a blog hop theme entitled The Gallery, displaying photographs of various themed entries.   

This week's theme is on the topic of Body Parts.    Oooo there are a lot of really interesting entries!   Because I've already done a post about my daughter's uvula, I thought I'd post that link below.....  

Interesting stuff, for those of you who don't know about the little appendage hanging from the back of your throat, or what it's use is. 

Click and READ ON!

A CRAZY Kind of Faith....Perfectly Useless information: The UVULA

Want to join in?    Click here:   Sticky Fingers, Body Parts Blog Hop

Technological crossroads

Okay.   I'll admit it.    I am one of those people who still does not have an I-Pod.   I do not have an I-phone or a Blackberry or any other of those cool new fandangled-phones that are all the rage.    Heck, I don't even get the whole twitter thing yet (although I do have facebook account and a cell phone).  We do not have texting as an option in our cell phone package, and we do not have a Wii.  Yes, in short, I'm a technological loser.

But here's the thing.   Everyone I talk to says they're addicted to their cell phones.  I know that I would not be an exception.    My husband already thinks that I have an addiction to the internet.  He razzes me all the time by breaking into his theatrical:  "Hi, my name is Chris....'hi Chris'.... and I have an internet addiction." skit.  Of course, this makes me laugh and brings into reality the fact that I want to be with him and the kids, even though the computer beckons me.   I KNOW I'd love having an Android or a Synthroid or whatever the heck the phone name is.   I'd be checking in all the time.   

And then there's the guilt.  (Like now when I'm writing this post and dear hubby would enjoy watching the Packer game with me.   There's a warm fire going and it is very inviting...)  But I feel this pull to come and write this post.    (I know....you're all thinking:  yes, you are addicted.  SEE???) 

We had friends over last night who are in their 50's (empty nesters...) who were showing us all the cool things they could do with their phones.   Heck yeah, those phones ARE really cool.  I would LOVE one!  Kinda like how an alcoholic would love a drink....

Here's another thing.   My kindergarten daughter is learning computers at school.   She's already loving the technological revolution.   I, on the other hand, feel like I am turning into my mother:  "Ya know, before you know it, people will not even be talking to each other anymore."  Yes, it seems I could swiftly become an old fuddy-duddy (no reference to you mom.) if I did not at least entertain going with the technological-flow.   Technology IS a generational reality....kinda like Elvis and the Beatles.  And....I do not want to be left behind.     

Okay,  one more thing.   I am one of those people who really get into nuances....take facial expression and body language for example.   I also can easily misread (or read into) something because of not fully getting the entire meaning / context in print without those subtle nuances.   Yeah, I'm kind of a relational junkie who is pining for the old days before FB, and texting. 

The solution?   Remain pining for the old days?   Go to Sprint or Verizon and tempt myself to just go for it?   Get on board, start slow and have a behavior management program in place? (Like, honey...please lock up the phone for me.)  Wait until I'm forced by my now-5 year old to finally succumb?     

A lot can happen in two days...

Thursday Kai and I spent the morning at the Surgicenter at Children's for ear tubes.   Yesterday we spent the day at Children's for an MRI.   Two seemingly routine procedures turned out to be very UN-routine.

We've done ear tubes before.   It has always been kind of a minor procedure.   Turns out this time that Kai's left ear canal was sort of curved and his previous ear tube was on it's way outta that ear.  Well, while on its way that tube apparently left some kind of  scarring which the surgeon did not want to disrupt for fear of puncturing Kai's ear-drum in the process.  

Luckily there was no fluid in that ear, and unless Kai shows problems with fluid accumulation we may not need a tube in the left ear this time around.   The surgeon did mention that the left ear canal is shaped a little flatter and oblong, and we know that the left side is smaller than the right side (The ENT that did Kai's tubes the first time mentioned this...along with the "heads up" that we may want to keep genetic testing in the back of our heads, as this kind of assymetry with unilateral clefting can sometimes indicate a "syndrome" of some type.  HOLD that thought...)    

In recovery, Kai was a raging mess.   When I entered the recovery area I immediately heard my son's familiar wailing.  Two nurses beconed me into his room and suggested that perhaps he would calm down with my presence.   He did.   For about two minutes.    Until he wanted to bolt down apple juice and I would only let him take small sips (he was still pretty urpy....didn't want him to up-chuck.).     After getting the "vitals okay" signal, the nurses suggested that I may want to just take him home (eg.  "get this raging kid outta here!")  After about 20 minutes more of wailing in the car (my meditation music did not work to soothe him) he finally peaced-out.   The rest of the night was uneventful, and Kai was happy as a lark.   He slept from 8:00 last night until 8:45 this morning....awakened to mommy feeding him jello, in time to get ready for sedation, round 2.

Kai's MRI was at 11:00 yesterday morning.   He did surprisingly well this time.    No gas or versed this round...just good old fashioned IV drugs (the legal sedation kind).   He emerged from recovery a peaceful smiling kiddo.    Completely the reverse of yesterday.    The MRI tech said that his carotid arteries were "notably very squiggly," but that was all she could tell us, not being an MD. 

[See post: visit-with-craniofacial-team for details of the need for the MRI.]     

About 2 hours after the MRI I received a call directly from Kai's plastic surgeon (I've never spoken with him on the phone!).   He said "Kai's MRI results are really something to look at.   Next time you're in I'll have to show them to you.    His carotid arteries basically loop around from the base of the neck to the back of his throat where they come together in a very odd fashion.   Basically he'll never be a candidate for any kind of throat surgery...tonsil or adenoidectomy, or pharyngeal flap [as we were hoping for  :( ].   You'll need to be sure he doesn't walk around with popsicles or suckers either....one fall could be it for him."    Ugh.  Kai IS a clutz, and contrary to popular belief, I do NOT have eyes in the back of my head to keep a constant eye on him.

Looks like this odd carotid situation was created in the first few weeks of Kai's gestation.   With this in mind, I inquired about re-visiting genetic testing to determine if all of these oddities (assymetrical eustacian tubes, endocrine issues, now this carotid thing) are part of some kind of syndrome.   Doc said this is "absolutely possible."  I mentioned that we had a genetic workup about a year ago for a chromosome analysis and testing for Fragile X, but it did not include a specific analysis for micro-deletion syndromes which would include those such as velocardiofacial syndrome or others common in kids who are cleft-affected.   He is suggesting that we continue to pursue more genetic testing, acknowledging that these oddities DO raise a red flag.   Ugh....again.   

Sorry this post seems pretty clinical.   It is a lot to absorb.   Writing helps me absorb it.   

Wordless Wednesday...Climb on, Kai!

A little about meeee

Jen at The King and Eye is hosting a blog gems blog hop.   This week we are asked to share a little bit about ourselves.   The intent of the hop is to air our blog archives, but after perusing my old stuff, I find that most of it is about my kiddos!   SO..... I decided to do this post, and thought it would be fun. 

• I worked at a toilet seat factory when I was in college.   Third shift even!   To this day I may occasionally lift a seat or two just to see if it has a Bemis factory logo underneath.
• I have a birth mark on my back in the shape of New Jersey.
• I went through a "save the world" phase in '95, when I traveled to Guatemala, Honduras and El Salvador for a summer (sans medical insurance, like a bonehead. This was during a time where there was still a lot of political upheaval in those countries.)  I did pilgrimages to the places where missionaries and the Archbishop of El Salvador were murdered.   I actually thought of doing some kind of missionary work (without the proselytizing).   Luckily, I changed my plan and worked with substance abusers in Pennsylvania instead.
• I have very talented feet.   I can actually pick things up with them.   My family used to tell me that I'd be "all set" if I'd ever lost my arms.   (Oh yeah, and I can get my foot behind my head too.   Can't touch my toes to save my life though!)
• I absolutely abhor onions.    Hate em.
• I dated a guy for two years who turned out to be gay.   Yes, I've had to answer a lot of questions about THAT one.   
• I was 3rd runner-up and Miss Leadership in a teen pageant in my home town when I was a junior in high school.  All my friends did it, and I thought it would be fun.   Funny thing is, I HATE pageants.   If my daughter ever asks to be in one I think I'll have a coronary!

Happy New Year...OUCH!

I always thought that old people were the ones that fell. Images of feeble elderly folk come to mind, having trouble with balance, coordination and navigating their way in cumbersome conditions. Of course, not an agile-bodied 40-something year old like myself, having always been the active type and naturally mind-body aware (insert guffaw here...)

Yesterday the fam and I celebrated in New Year's day running errands... yeah, great fun. I was jonesing for a Starbucks big time....you know, that little cup of soul caressing in the middle of a chaotic afternoon. Scott pulled up into a parking space next to a tree, and I graciously agreed to brave the cold to make my way into Starbucks to retrieve a Gingerbread Latte for the both of us.

The last thing I remember is trying to avoid walking my head into a branch....and finding myself hurling over the concrete tire bumper headlong into the side of a stone-covered planter in the front of our minivan. I had one of those very disorienting experiences, along with the "oh shit...I hope I didn't hurt myself beyond repair because I know I'm in shock and don't feel anything right now" realizations.

My hubby, [donning his invisible superman cape] came bolting out of the van....."OMG Chris, are you okay? man, you look terrible. Can you move? Let's get you home." And another woman came inquiring as to my welfare, carrying a steaming frothy cup of something that at this point, I could've cared less about.  I guess the fall must've looked pretty bad.  Hubby says he swears he thought I'd be unconscious by the way head banged into the side of the planter. Yup, the side of my cheek looks like I took a cheese grater to it (ew, gross!).  I have a nice bruise on my collar bone and two bloody-knuckles. (No, I am not trying to cover for a bar-fight that I was in!). I can also honestly say that I have not had my knees skinned since I was a kid....until yesterday!

So, why am I sharing this...and what does it have to do with New Year's, other than the fact that it happened on New Year's Day?

Well...I consider myself a pretty tough-skinned woman. A "pull up your bootstraps" and "let's tackle this problem head-on" kind of person. When I got back into the van and sat in my seat....using kleenex and wipes to stop the bleeding from my face and knuckles.... I simply could NOT hold back crying. I was not crying because of the pain....I still was not feeling any. I was not crying because of knowing I appear like a beaten housewife and my face would look horrible. I was crying because it just hit me.....I was SO, SO tired. Tired of all the stuff that comes from parenting very challenging children. Somehow, taking this really bad fall gave me permission to just let it all go, because now I had a reason.

The new year brings with it realistically, more of the same. Everyone has joys, everyone has struggles. The trouble is, those of us stuck in the "struggling" camp constantly feel the pull to appear that everything is just peachy-keen, while we have the internal experience that we're about to fall apart. This New Year's, I want to climb up and shout from the rooftops: "Hey struggling people....Come out, come out, wherever you are! It's okay...I'm here too!"

A friend we met in China when we adopted our daughter posted this video on Facebook, and I think it sums things up nicely. Simple truths delivered very eloquently.

Living Wholeheartedly



BTW,  am still in my jammies (it's noon), leisurely enjoying my cup-o-joe guilt-free today.