Sept is Craniofacial Acceptance Month

September is Craniofacial Acceptance Month!  I guess I prefer Awareness to Acceptance, or Craniofacial Education Month would be even better, but whatever the title, the point is to educate others.  So thought I would educate the 2 people who may read this ; )  Feb. '09 my son was born with an incomplete bilateral cleft lip.  This was a shock surprise at birth.  We had the usual 20 week ultrasound, she got a great, full on, unobstructed facial shot and still somehow completely missed the diagnosis.  It was probably a blessing that it was missed, I would have worried myself sick for the remainder of the pregnancy.  Like most people I thought this was something that happened only to those unhappy kids in the Smile Train ads featured in the back of the magazines.  I had never seen a child with a cleft even though it is one of the most common birth defects in the United States, occurring in @ 1 in 700 births (this figure is dependent upon where you are getting the info, ethnic origin and type of cleft).  So if it's so common, why don't you see more cleft affected kids here?  Because typically the lip is repaired at @ 3 months old.  If you look, really look, at people you will see many that have the telltale faded scar!  Unless a person is looking for it though, it would never be noticed.  
Some things I wish people knew:
- If a mother has a child born with a cleft it DOES NOT necessarily mean the mother smoked, drank, did drugs, ate terrible, had no prenatal care, didn't take her vitamins, or any other reason people use to blame the mother.  We have no family history and I did everything "right" - stuff just happens sometimes.  Dr's don't fully understand what causes clefting.  It is caused by a gene mutation either passed down through generations, through an environmental exposure or just a random unexplained incident.
- Being cleft affected does not affect development or mentality therefore it shouldn't be surprising that the child can crawl, walk, ect. at the expected time.  If the palate is involved there will most likely be some speech therapy needed, but other than that all other milestones are met the same as any other child.  There are many syndromes associated with clefting that can result in delays, however an isolated cleft does not.
- When the lip (and/or palate) is repaired, that is not the end of treatments for that child (or his/her parents).  As they grow, there is often nose adjustments, lip revisions, laser scar treatments, MUCH orthodontic work, ear tubes to replace, and speech therapy.  When you ask "is he done with surgeries now" the answer is no - he will not be done until his teen years. We don't know how his face is going to grow, so we don't know when additional work will be needed, but it's looming out there .  Each year we will go back for a check-up and our perfectionist surgeon will see how his nose is growing and scar is fading and determine what, if anything, needs done.  Then when he is 6-12 yrs the orthodontic work will begin.
- The lip is formed @ the 7th week of pregnancy, the palate @ the 11th week.  So many clefts are developed before a person even knows they are pregnant.
-  Mothers of  cleft affected babies think their babies are just as beautiful as non affected babies!  We also have feelings!  So if you are one of those nosy people who feel the need to pop their heads into a new moms stroller/snugli/cart and you happen to see a baby with a birth difference - be polite - "oh what a cute - long pause - outfit" does not qualify as polite.....
- Harelip is a bad, bad, derogatory term that should be stricken from the English language - don't use it.....Ever............ 
- Yes, he has a scar, it will fade as all scars do.  No, he will not have to forever hide it with a mustache.
-  The cleft itself doesn't hurt, surgery is the part that hurts.  Those kids in the Smile Train ads look so sad because if they photographed them looking happy then no one would send donations.  Don't get me wrong, Smile Train and Operation Smile are incredible organizations and they are wonderful charities, I just feel that the way the children are depicted could be misleading.
- Finally, most importantly, we love him EXACTLY the way he was born!

There are many famous people who are cleft affected!!!  This is a very short list of those that are more well known -
King Tut is believed to have a cleft palate
Cheech Marin
Doc Holliday
Tom Brokaw 
Peyton Manning
Tad Lincoln - Abe Lincolns 4th son
Jesse Jackson
Joaquin Phoenix (microform cleft lip)

Appointment with the Development Pediatrician

Today has been a loonnggg day.  We left at 8am to get to the appointment at 9, then we waited and waited and waited some more.  Finally, over an hour late the Dr. came in!  Then we talked, for a good 1 1/2 hrs, then she filled out paperwork for another 1/2 hr.  The results of the appointment, in a nutshell, is that she is going to re-evaluate in 4 months.  During this time she wants him in a structured preschool a few days a week.  He needs to learn how to sit at a table with his peers to do activities, eat and do "imaginative play".  She is hoping that between doing this and the med he has been taking (which has tremendously helped his anxiety), we will see a totally different, social  kid.  Right now she is delaying Dx, but will go over his developmental progress again in Jan. and if he still isn't interacting with kids, making better eye contact, ect. we will be looking at a Dx on the Autism Spectrum.  She suggested that for meals we strap him in to a sturdy highchair and force him to sit at the table to watch us eat.  I'm not sure that's going to work out since the reason we stopped using the high chair in the first place was because he would repeatedly bang his head so hard against the back of it that it would almost tip - but we will give it a try.  If  he doesn't start eating better he will need to begin feeding therapy again. We also need to attempt to stop the obsessive circle drawing by telling him to color or that we are drawing other shapes instead.  We told her we all do this already, but will continue to try.  His speech is great though, at about the 36 month level - which to me is awesome considering he is cleft affected!!!  So, long story short, there are "red flags" that would lead her to believe he has high functioning ASD.  This is not a surprise to us, we know he is "wired" completely different than the other kids.  Hopefully being in a structured preschool setting will help him how other kids eat, color and interact!

Busy, busy days

I decided to start this blog because there is just so much going on!  For starters it's T1's first week of college!  She decided a couple weeks ago that she didn't want to go the the college that she had originally applied for, been accepted to and attended orientation for.  So she decided to go through with the great last minute college switch.  It's all working out for the best though.  It's a smaller school, more personalized, she just fits in better.  This semester she is taking Chemistry, Botany (and labs for both), English and Christian Worldview.  She is also required to attend Chapel on Mon, Wed and Fri and either Chapel or her own Church on Sun.  I've hardly seen her the last couple weeks as she switched everything, attended orientation and is now attending classes.

This is T2's last year in middle school, next year she will be moving to the high school!  She is cheer captain this year and as captain she has to call the cheers!  She and the co-captain go through the cheer once, then the rest of the squad joins in.  She's been really nervous and it's been hot out.  The second game was Monday, the 1st home game!  The beginning of the 4th quarter, she got a little lazy (it was VERY hot) and her southern drawl came out a bit and she says as she was calling the cheer which was supposed to go "six, six, we want six", well, she said something totally different and inappropriately replaced the word six, drawing out the i.  I didn't pick up on it, and tried to reassure her, but she thought she was in big trouble.  The coach didn't say anything, so hopefully no one but her and a couple in the squad noticed : )  During the same game the girl singing the National Anthem forgot the words, paused in the middle of the song, said "oh crap" over the intercom, before finishing the song!  I told T2 if anyone said anything about her "mispronunciation" then to tell them at least she didn't say "oh crap" in the middle of the Nat'l Anthem!!!!

K seems to like her teachers this year.  This is the first year she has been without recess and also the first year she has switched classes.  She has 4 different teachers.  She will also be playing flute in the beginning band which she is VERY excited about!

J has been in Mother's Day Out for a few hours a week the last couple weeks.  He has adjusted well considering he has never had a babysitter out side of the family, maybe to well?  I think I could have left him in a room of aliens and as long as they didn't make strange noises he wouldn't care.  The only problem is he won't eat - anything!  Not even gummy snacks which are his favorite!  IDK how to help him since I have to feed him at home.  I just hope he figures out the eating thing before he starts "real" school.