Monday, July 20, 2009
Clinic is great. Great in concept. We go on one day, and see all the doctors on the cleft team. We see Plastics, ENT, Ortho, Speech, Audiology, and state financial people. See, great. Except the waiting. It's only once a year, I really shouldn't complain. :)
So this yr. This year, I think the ortho will talk about starting to pull his midface forward. I don't know, maybe he'll wait. From the beginning, we have talked about doing it when he was 3 or 4. His underbite is pretty severe. When his teeth are cleched, his bottom teeth completly cover is top teeth, and a little over. His sweet little profile is so flat. But, it's him. I have doubt about changing the way he looks! *sigh*
I also think he has a small fistula, but I could be wrong. Since his hard palate was fixed, he doesn't have stuff coming out of his nose anymore, but I still think there is a hole, up by his gum line, that is bigger than it was 3 months ago.
I'm interested in how his ears are doing too... His tubes fell out, about 4 or 5 months ago. When we went swimming the other day, he was tugging on them. I'm sure I'm making more of it, than it is. Hopefully.
Then there is Emma. Last year, I took her to the ENT because she just doesn't sleep well, and her tonsils are huge. I was hopeing it would get better, but it just hasn't. So she is coming with, to revisit getting her tonsils out. *SIGH*
Should be a long day.... I'll update tomorrow! Hopefully. Haven't been too good about that have I! ;)
Wednesday, July 8, 2009
Tuesday, May 26, 2009
This is the happiest easy going kid in the world, as you probably know. It was so out of his charactor to act like this. I hate to say it, but I sat there for an hour, trying to get him to change his mind. Which is essentially what needed to happen. He wasn't screaming, or making a scene. The only scene, was me being there. For the most part, the kids went about their day, ignoring us, except for one little girl. She came up to us, and rub his leg, because that's all she could reach, and said, "Wanna come play with us buddy?" She was so cute. This day, he didn't take her up on it.
The next time he went though, he started to do the same thing. This time, I wouldn't pick him up, so he just clung to my legs. Unfortunately, he is just the right height, so his face is in my cr*tch. OYE. Anyway, this same little girl, came up and said, "Come on Jack, come play with me!" He looked up at her, looked up at me, took her hand and went off to play. It was seriously the sweetest thing I have ever seen! It made me cry! Everytime I take him to class, she comes and gets him, and they walk off hand in hand.
When Parker was in preschool, same class, it was the year they introduced main streamed special ed. One day, when I picked him up, he was reading a book to a little girl who didn't have very much communication- but he didn't care. This made me cry. Then there was this story. Nick and Emma too, I'm happy to report, have always been so sweet to others different from them.
Now it is our turn, for someone to be sweet to our Jacky. This little girl, is the first friend that he knows her name. He talks about her incessently. It is so weird, and special, to be on the other side. And yes, I have thanked her mother. :)
The reason for my absence? Well Facebook is a big one. It's SO MUCH easier to put pictures on. And easier to write a one or two line quip. Plus I have control over who sees what. Although most of the people I want to see both this and facebook, can, so it's fine I guess. If you are NOT on Facebook, you really should be. It's very entertaining! :)
Also, it's hard to put into words sometimes, things that happen. I've had many great experiences lately, but have really had trouble putting it into words. But I shall give it the ole college try.
And I've been SO tired, it's hard to "relive" the emotions of some things. I know, it's just an excuse, but it's all mine, so take it or leave it!
Ok, so... some of you may know of my love for musical theater. Every few years, a good one will come along. We have a great community theater in my area. Several as a matter of fact, but in my town in particular. I've been able to do 3 since we moved here 15 yrs ago, in between kids mostly! This year they are doing one Parker, Emma and I can all be in! It's been fun, and stressful, to be in a show with my kids. We'll see how it is in the end. They are having a good time, I think. :)
It's been hard to be doing a show and working at the same time. The last three shows I've done, weren't like that. I miss my work family, not being there as much, and my paycheck. But it's good for my soul, so it's worth something! Not missing work, being in a show! :)
Jack has been doing well at school. Just in time for school to end... ugh. I have a story, but I'll save it for another post. :)
Still recovering from Idol... seriously.... I just blogged about it. You may not like my opinion, but really, does it matter! :)
So there's a little update. I have a few posts to add, so we'll see if this one gets read! :)
Sunday, April 5, 2009
Thursday, March 19, 2009
He was SO awesome! SO EXCITED!!! We got a new backpack, and a new shirt! He picked out both, and was so cute! And he was so excited to take pictures!
Man I love this kid! :)
The new backpack he picked out! And then in the car was telling me everything on it. "Ook MOM, Elmo's nose! Eyes!" "Elmo i oft!" (Elmo is soft)
He is in the Orange room!
Ok, I'm still nervous about sending him. Even though they are my friends, and I know he is in good hands, and he is FINE... I'm still freaking out. But I'll just keep looking at these pictures, and I'll be fine! Right?
I feel so goo about it. He's going somewhere that is like home for me. His teacher has been my friend for years. I feel great about his IEP. He's going to the right place, at the right time!!
I'll be sure to post pictures!! Now... we have to go buy a backpack... He HAS to have a new backpack! :)
Friday, March 13, 2009
Well last night, one of the Doctor's said a very flippant remark, that has me bugged to the core.
Here's what bugs me. The fact that most people don't know it's offensive. The fact that McSteamy said it. People think he's cool. People want to be like him. The fact that my kid, has one.
I go deeper than just his flippant remark, I pretend it's real. What if the parents of that kid were walking by as he said that? What if the kid was being wheeled to post op, and heard him say that? What if I was sitting in our little post op room across from the desk, and I over heard the nurses talking about the kid across the hall with a harelip. I seriously... think I would rip someones throat out.
Now, I am fully aware it is just a TV show, and maybe my feelings are raw, because we JUST had surgery, but I'm still bugged. I put this up first on my facebook, and have had great conversation about it. Someone asked, "Why is it so negative?" And sadly enough, I didn't know. But I was directed to it.
Here it is:
This one is about: "Harelip" - The Dark History of an Unfortunate Word
(c) 1996 Wide SmilesThis Document is from WideSmiles Website - www.widesmiles.orgReprint in whole or in part, with out written permission from Wide Smilesis prohibited. Email: firstname.lastname@example.org
The accepted and appropriate word that defines a birth condition in which facial tissues fail to fuse during gestation is 'cleft'. However, the parent of a cleft-affected child does not go far before hearing the term, 'harelip' instead. And we do not like that term. Why? Isn't it just a word? Most people don't mean anything negative by using it. Well, perhaps knowing the history of the term may help us to understand why it is so inappropriate. And so here, excerpted from an article from WIDE SMILES, is the dark history of the word, 'harelip':
* * * * *
In the 16th century, it was a French Doctor who, when discussing a patient with a cleft, first coined the phrase that would be translated, "Lip of the Hare". In English it was more comfortably shortened to "HareLip". It was an unfortunate pairing of similes. The good doctor was only reflecting that the lip was split, as is the lip of a Hare (and every other rodent). But unfortunately for those who were born with a cleft, the hare had also long been associated with witchcraft!
It was believed throughout the dark ages and even to relatively recent times that a witch would often take the shape of a hare. And if a hare were to frighten a pregnant woman, she would give birth to a child bearing the mark.
In the 17th century the hysteria surrounding witchcraft rose to a new and frightening level. And it was during that time that the hare had become a symbol of Satan himself. A woman bearing a child with the mark of the hare, or a harelip, at that time, was thought to have had to have had relations with Satan. And thus, the cleft-affected child born of a woman, say, in Salem Massachusetts during the mid 17th century, in the midst of witchcraft hysteria would have condemned his mother to a violent end. That baby would have constituted "irrefutable evidence" of his mother's unnatural liaison with Satan.
Fast forward now to the 20th Century. Many people still use the term, "HareLip" when they mean to say, "Cleft Lip". Do they associate our children with Satanism and witchcraft? No, surely they don't. But it is nonetheless a term that has persevered in our language, long after a more accurate, more appropriate term has been coined.
At the very least, the term, "HareLip" likens our children to a common field rodent. It is not a soft, fluffy bunny. It is just a rodent. At the very most it harkens back to a darker past. A past that would never have happened were it not for massive hysteria on the part of a superstitious and almost militantly religious population. A past that condemned our children as the Devil's Seed, and condemned their mothers to death.
Maybe it's because I'm from Beverly, the town just north of Salem. But this really got to me. I try to be upbeat, and educate people about Jack's cleft. I was so excited about "Smile Pinki" getting so much attention. But when things like this happen, I feel like we are taking 10 steps back. I have seen the documentaries from operation smile, that talk about children being shunned. I just saw this. But I feel like we have really come a long way, and then this happened.
I was saying on facebook, how annoying it is, that as upset as most of my friends with cranio facial conditions in the family and I are about this, it won't get the attention it deserves. It's not going to be a hot topic on The View, it's not going to be covered on all the entertainment shows, or even make it on the news. "McSteamy says HARELIP, sending many families affected by cleft lips, into an emotional frenzy! WHAT is the origin, WHERE did it come from, WHY are these parents so upset?" Ya, NOT going to happen. THAT annoys me. So I'll just write about it on my blog, and on facebook, and put it on You Tube. If I educate one person, I'll be happy. I just wish my voice was bigger, louder, prettier, skinnier, drunk, had an umbrella hitting cars, or wasn't wearing panties. Then maybe I'd get my point across.
I'll calm down soon enough. Maybe...
Tuesday, March 10, 2009
Jack had his hard palate repaired today, and some revision on the inside of his lip. So far he's doing pretty good. He hasn't peed yet, it's been 12 hours, I'm starting to worry a little... but when do I NOT worry!! :)
We should be home by early morning... if he pees that is.
He is waking up more and more. Gramma is with him now, and I need to grab some food... So I'll update more tomorrow!
Monday, March 9, 2009
This is one of my favorite videos. It's from right before his first surgery. As we head into #8, I love seeing his sweet wide smile! Oh how I miss it!
And of course this one.
My GYN's office is at the hospital where I got most of my prenatal care, and where Jack was born. Everytime I go there, I'm right back to the time we spent there. It's Pavlovian. I pull into the parking lot and I have a panic attack. I had so many appointments there, that didn't go well.
At this hospital, as I'm sure many, everytime a baby is born, they play a little "Rock a Bye" 3 sec thing over the PA system. I remember hearing it when I was there for appointments, and the yearning I felt to hear it play, when Jack was going to be born alive. I remember hearing it, as they wheeled me back to my room after the c section and crying, cuz I knew it was for him, and he was alive and well. I had an appointment last week, and while we were there, the song came over the PA. I was immediatly overcome with tears. Here I was chasing after Jack 3 years later, hearing this sweet little song, that I'm sure many people don't even realize. He was running into the gift shop. When I was retrieving him, I saw these little bears wearing a tshirt that said, "I "Heart" St. Mark's Hospital." I HAD to have it for Jack. I want him to always know, what they did for him, and for our family. That place changed our lives forever.
If you want to have your own walk down memory lane...
I just can't believe he's 3. And he just gets sweeter, and cuter everyday!!
I LOVE YOU BUDDY!!!!
Friday, March 6, 2009
Monday, March 2, 2009
Friday, February 27, 2009
Thursday, February 26, 2009
We also had the pre-op appointment for the surgery on the 10th. It was great to hear the plan of attack! :) AND... he is going to revise under his upper lip. I've been worried about this for a long time. He has tissue that droops down when he grins and laughs, and that piece that goes between your gums, and your lip? Ya, that thing. His is right between his two middle teeth, and really short, so they are fixing that too. It's called a vestibuloplasty. I couldn't find any good info when I googled it. Sorry. But I'll try to get some good before and after pictures. :)
And of course the palate. We'll be staying overnight, but on the surgical unit. I love it there. The germ level is low! ;) AND they are very attentive!
So, I'm feeling better-ish... now that I have a plan. *sigh*
If you have been through this process, you will know what I'm saying. Maybe it's just me, and the way my brain works. See, I'm a planner. I don't like a change an abrupt change in plans. And this... is abrupt. Since he was born, I have been planning on the summer after his third birthday. And now, it's tomorrow. I don't like when things sneak up on me. Don't get me wrong, I asked for this! I said, "Can we move it up?" But when reality sets in... mamma's freakin out.
So here's what I'm freaking out about. I know, you wanted a list... :)
- He's 3 now. He can protest.
- He's a three yr old, who wants to eat, the second he wakes up. And follows me around the house whining, until he gets something, and then not just something... EXACTLY WHAT HE WANT'S!!!
- He hasn't been under anesthesia in a yr and a half. His little body is different. How is that going to go?
- He's smart. What is HE going to think of all this?
- What is he going to think about the new hole in his mouth.
- What if they drop one of the screws in his throat? I know, not likely, whatever...
- What IS is palate going to look like? What if it hasn't grown together enough? What then?
- Oh, and I don't have a laptop this time. My brain, may implode. I'm just warning you.
I've been thinking alot lately about his speech. I've been told when the prosthesis comes out, they are more nasal sounding. I'm not really sure how much worse it can get with this kid. It should be interesting. Then I worry, is he going to stop talking, because it feels so weird?
But I heard a great webinar the other day. It was a speech therapist. What I realized was, even adults can relearn their speech patterns. Even I did. I grew up in Boston, where I'm sure you knw, they have HORRIBLE accents- and I say that with love. How they don't know this I'm not sure... heehee Anyway, I tried really hard when I moved away to lose the obvious ones. But my friends would catch me. They said when I talked fast, it would come out. Like quorta (quarter) things like that. All you Bostonians, don't send me hate mail, you know it's true! ;)
So it got me thinking about Jack. I have been so worried about PREVENTION with him. MAKING him say it right. But he doesn't even have the tools, so to speak-no pun intended ;). I have said over and over, the more he talks, the worse it gets! But that my friends is what speech therapy is for! He just needs to work on articulation! Getting the hole fixed in the roof of his mouth should help! So I am glad he is getting it fixed, before we start with a new speech therapist.
So I just keep thinking about how pre op will go. He is SO much older now. I mean , he really is a different person. When Emma had her's I explained it to her as much as I could, and she did pretty well. But he is big, but little. *sigh* Should be interesting.
Now I'm back to waiting... how I hate it. I wrote this last time, nothing has changed. I just reread it, and it makes me cry. I really don't want to, but again, I know this is in HIS best interest. Getting it out helps. Rereading past ventings, makes it worse though... ugh. :)
Sometimes.... it just sucks.
Sometimes... it rocks.
Here's to praying for the last one.
Wednesday, February 25, 2009
Well, moving it up, starts friday. When I called to see if the timeline fit for Jack, she said, yes, but March 10th, is the only opening I have. The day after Jack's third bday, he'll go in for his 8th surgery. This Friday, Feb 28th, he goes in to remove the prosthesis (retainer). It's considered surgery because they will put him under general. And he IS getting something "unscrewed" from his jaw. I've been told from my experts, it is smooth, and easy. Let's hope.
So now starting preschool is put off for a little bit too. BUT, the good news is, it is perfect timing. Now we will be able to start speech therapy... WITH A PALATE!!! YAY!!!!!!!!!!!!
I'll keep you all posted!
Thursday, February 19, 2009
Monday, February 9, 2009
This week is the play! It has been SO fun, and SO stressful! I can't wait till all our hardwork is on display, ya know?
Emma had a great bday! The big 6!!! I'll get pictures up sooner or later. I put some on facebook! And some cute videos of Jack.
Work is good, still fun. The current show is SO FUNNY!! Makes me giggle everyday!
Jack is heading out of Early Intervention! CRAZY!! He starts preschool the day after his bday! March 10th. Wow, I still can barely believe it. I have stories about when we did his testing... So be watching for that!
So, I haven't fallen off the planet, just running around on it!
Monday, January 26, 2009
they don't have time to make it.
Real Mothers know that their kitchen utensils
are probably in the sandbox.
Real Mothers often have sticky floors,
filthy ovens and happy kids.
Real Mothers know that dried play dough
doesn't come out of carpets.
Real Mothers don't want to know what
the vacuum just sucked up.
Real Mothers sometimes ask 'Why me?'
and get their answer when a little
voice says, 'Because I love you best.'
Real Mothers know that a child's growth
is not measured by height or years or grade...
It is marked by the progression of Mommy to Mom to Mother...
The Images of Mother
4 YEARS OF AGE - My Mommy can do anything!
8 YEARS OF AGE - My Mom knows a lot! A whole lot!
12 YEARS OF AGE - My Mother doesn't really know quite everything.
14 YEARS OF AGE - Naturally, Mother doesn't know that, either.
16 YEARS OF AGE - Mother? She's hopelessly old-fashioned.
18 YEARS OF AGE - That old woman? She's way out of date!
25 YEARS OF AGE - Well, she might know a little bit about it!
35 YEARS OF AGE - Before we decide, let's get Mom's opinion.
45 YEARS OF AGE - Wonder what Mom would have thought about it?
65 YEARS OF AGE - Wish I could talk it over with Mom.
The beauty of a woman is not in the clothes she wears,
the figure that she carries, or the way she combs her hair.
The beauty of a woman must be seen from in her eyes,
because that is the doorway to her heart, the place where love resides.
The beauty of a woman is not in a facial mole,
but true beauty in a woman is reflected in her soul.
It is the caring that she lovingly gives, the passion that she shows,
and the beauty of a woman with passing years only grows!
Friday, January 23, 2009
Friday, January 16, 2009
So I thought maybe some new names would help! Check it out, what do you think??
I could be:
A Pirate named Reeking Nancy Jones.
A Rocker named Charity Sparks.
A stripper named Samantha Sugarthong
A Jedi named SIMJE DEBEV of the planet ambien
The Crazy-Weird Shakespearean, named Jaquenetta the Hot Wench
A nerd named Grace, the Postscript Savant
A socially accepted mormon named Jennilyn Kaysional Tempest
A Dragon named Gretchen the Small one (Silver Dragon)
A Fairy named Fanny Crimson Moondust
A Vampire named ELENA (Moon)
A Super hero named Queen Vixen
A Mexican Wrestler named Violencia en Fuego
Ok, that was silly. But seriously... I have issues. And I think this name thing made it worse! ;)
This is who I think I am today in alphabetical order:
addict, activist, anxious, aunt
blessed, behind, NOT the biggest loser-gimme a week on campus, I'll be fine...
lover of choral music, cute, caretaker, cargiver
drama queen, detective, director, daughter
emma's mom, excited, exhausted
funny, fixer, frustrated, freakin awesome
giant sucker, giggler
huge heart- is that the same as giant sucker? heartburn haver
Jen, Jenny, or Jennifer- depending on how you know me. Jack's Mom
kooky kewl- Parker said it...,
leader, loser, lucky
muncher of munchies
nice- too nice sometimes (see giant sucker and huge heart), nick's Mom, nausous
overwhelmed, octupus, over achiever
paranoid, people person, parker's Mom
quiet, queen of everything, quitter
reader, restless, regretful
sinner, saint, sad, sassy, stay at home mom, sister, singer, single mom
tall, talented, talkative
wasteful, wishful, waning, working mom, wife, WoW hater
xray vision- eyes in the back of my head, and can read a ct scan! ;)
yellow bellied, yeller
zealous, dont get enough Z's
Wow, that was intense. Try your own alphabetical list... see what you come up with!
Thursday, January 15, 2009
I'm sorry, it has some "bad words" in it, so you might want to shield your children!
The funniest thing for me, is back in the 80's they pointed to the sky, now I just try to keep the high and dry! ;)