Last Wednesday, I boarded a plane with two other gentlemen from church for New York City. We were on a mission...literally. Ha.
It was a harder trip for me than I expected it to be. I mean, c'mon! I have been to Africa for crying out loud! How much more outside of my box can I get!?!? Yeah, um, apparently a LOT more! We spent our time in the Jewish communities. I did a little bit of homework on the Jewish faith, but not enough. My heart breaks for those that think that Jesus was a horrible, horrible, man! At least in Africa, the people had open hearts for the love of Jesus. It was a very hard trip for me.
I was the only female on the trip, which didn't help. The men I was with were awesome, that's not it- I just could have used a little estrogen companionship to decompress in the evenings (my room was on the 5th floor all by myself and the guys were on the 3rd floor where they had each other).
We got to see so much of NYC!
AKA: Obstructive Sleep Apnea
Ethan definitely has it. I took a call from his ENT a couple of hours ago to go over his sleep study results. So, basically anything between 0 and 5 episodes in an hour is considered normal; Ethan had 23. That puts him in the moderate OSA range.
If Ethan were a "compliant" child, we would be looking into getting him a CPAP, but that is obviously not an option for Ethan. Other options include: tonsillectomy, palette extension/expansion, and tongue reduction.
Ethan's tonsils are hardly enlarged, so we will likely have to consider all of the other options outside of the CPAP. The whole tongue reduction thing sounds so weird to me, and I don't think it will help us with his feeding issues- it will likely set us back even more, but I also can't risk the long-term affects of him having OSA either.
http://newsmax.com/US/florida-aborts-wrong-fetus/2010/04/12/id/355459
Headline: Florida Doctor Aborts Wrong Fetus in Twins
The gist: Couple do IVF with an egg donor. Twins conceived. Boy Twin suspected to have Down syndrome and possible heart defect. Girl twin not chromosomally enhanced. Couple opt to selectively abort Boy Twin. Doctor accidentally aborts GIRL twin. Doctor loses license over botched abortion. Couple aborts Boy Twin, ending pregnancy.
So, um...yeah, I do believe I just vomited.
Let me get this right...it was ok to KILL your son, but you're distraught over the KILLING of your daughter?
Seriously, these people should not be allowed to conceive ever again! Like another friend put it- babies are not like pizza toppings, you shouldn't go into having children with the idea you can just send it back if you got the wrong toppings.
Makes me so flippin' mad!
I haven't had Ethan's stroller in the car for months now. Granted, he *is* too big for it anymore, but if we really need it, he can still ride in it. But, we haven't needed it. Why? Because Bubs is walking SO well!!!
Curious George LIVE! came to Greensboro last weekend for a show. Ethan loves the character, but doesn't watch the cartoon, but I still bought tickets anyway. I figured it could be an early birthday present for him (his b-day is in May). I guess since I bought so early on, I was able to get amazing seats in the 3rd row on the floor. One of our friends from Ethan's old school, Abby, came along with us. Abby used to give Ethan CG gifts all the time, so I thought it was pretty perfect that she was able to go with us!
I wasn't sure how Ethan would react to the show- he's hit or miss with stuff like that. I used to take him to Disney on Ice, but he could care less so I don't take him anymore. But, this was different because it was a character that I knew he actually liked.
After facing a rude event employee, we made it to our seats on the floor. I sat Ethan in his chair and he then managed to slip through the hole in the chair, falling and hitting his head/scaring him. That basically set the tone for how he would be for the day. :( He refused to sit in his chair anymore, he wanted to sit on the floor. Well, he wasn't going to see anything sitting on the floor, so I had him in my lap, and he fought me 70% of the time- even while watching the show! Lil' Stinker Butt. Oh well- I tried. Overall, I think he enjoyed it.
Has anyone else seen this? My sister, Kim, sent it to me this morning. I had never seen it before. I found it interesting how so many people in the Down syndrome community refer to their loved ones as an angel and that is exactly how they are portrayed in this video.
3-21. Three copies of the 21st chromosome. Down Syndrome.
Today, we celebrate the lives of those with Down syndrome all around the world. The world.
Our handsome son, Ethan, was born into a world that frowns upon Down syndrome and other birth defects. Our son has changed the thinking of many people. Through his courage, tenacity, stubbornness, persistence, determination, and successes- he has shown that Down syndrome will not define him and that having Down syndrome is ok. It is not the death sentence that others may make it out to be. It is O.K. I am more than ok with Down syndrome because that little 8, almost 9, year old precious boy of ours has taught me so much about myself that I probably wouldn't have known without him.
As Ethan's parents, Scott and I are blessed and honored that God chose us with the privilege of raising him.
Seems like the obvious choice, right? Not so easy.
1) We *love* Ethan's teacher. If it weren't for her, we'd be gone. Where? No clue. Homeschool maybe. I just don't know.
2) Our placement now is the only severe & profound class within a typical elementary setting with age-appropriate peers. The other two options, while good schools, are completely segregated- not really what is in Ethan's best interest. And, in this day and age, that shouldn't be how it is anymore!
We are in a no-win situation. The higher administration of our school district are not on our side. They are the ones making these ridiculously crappy decisions. I am thinking of ambushing the next school board meeting...
I just updated my Facebook status. It says: Kristen Faulkner is frustrated. Yeah, that's an understatement. My FB status the other day said: Kristen Faulkner hates, hates, hates E's school. Yeah, that's also an understatement.
School: If you are just joining the class, I will catch you up quickly. We moved her from CA for a 5-star developmental day school. Ethan aged out and graduated. Ethan was then placed in a severe & profound self-contained classroom withing a typical elementary school. I was anxious and nervous about the placement but ended up being extremely happy with my decision for him to go there. Our school district decided to transfer the classroom from AWESOME school A to POS school B. Why? Their reasons still make no sense whatsoever.
So, we are moved to POS school B. It takes a half hour to even get there from our house. POS school B has a history of drugs and weapons. True story. Last year, cocaine and marijuana were found in the hall and a kid brought a handgun to school. This year, 2nd Graders- yes 2nd graders, brought knives and threatened to kill another kid because he was Mexican vs. being Hispanic. There are gangs present. So yeah, someone please tell me WHY THE FRENCH the powers that be in our school district thought it was a good idea to take kids who are non-verbal, in wheelchairs, mouth everything, and otherwise can't defend themselves from AWESOME school A with NO history of drugs or violence to a POS school B where they are at risk of finding drugs and ingesting them? Or, how about a little gang initiation? Sounds like and easy hit to me- the kids who can't defend themselves. FRUSTRATION.
Then, the administration just needs to be bopped across the head. Maybe then, they might actually get a clue. They have no idea what people-first language is. They use the "R" word like crazy. I helped Mary make a Disability Awareness Board and I even secured a speaker to come and talk to the kids about disabilities. The principal was going to say no to having the speaker come and then she agreed to having him come and talk for five minutes. FIVE FREAKING MINUTES!?!?!? FRUSTRATION.
The assistant principal is in the classroom yesterday morning and she argued with our assistant teacher and Mary over how things should be done for our kids. Ummmmm, who has the degree in Special Education??? Riiiight. She proceeds to talk to all the children like babies and like they don't understand anything. Then she saw Ethan's modeled looking skin and says, "What's that rash on his arms?" (mind you, I am standing RIGHT THERE). We all ask what she is talking about. She repeats her question and adds, "Why does his skin look like that?". "Who?" Mary asks. She then points and says, "That one". Oh.My.Freaking.Gosh. THAT ONE?!?!?!? Um, That One has a name. I seriously had to bite my tongue. That WILL be addressed. FRUSTRATION.
So there you have my HATE, HATE, HATE for E's school.
Grab This ButtonThere are a couple Food Network shows that I *love* to watch and get ideas. One of which is Barefoot Contessa. Scott doesn't like her very much because she is kind of snobby, but I would love, love, love to eat one of her meals AT her house in the Hamptons...HA. It all looks so yummy, but yes- she is snobby. You have to use GOOD vanilla, or GOOD olive oil, homemade chicken stock...blah, blah, blah. Anywho, there was an episode that I just loved everything and I knew that I could make it all: Individual Meat Loaves, Brussel Sprouts Lardon, and Buttermilk Mashed Potatoes. I opted to make my mashed potatoes like I always do because they are just plain yummy.
My mom makes a really good meatloaf, but I have always been nervous to make my own. Why? Who knows. Probably the same reason that keeps me from making real chili or beans in the crock pot.
Anywho, this has to be one of the best dinners I have ever made! Seriously. We ate leftovers for lunch and I think it was even better today! Yum, yum, yum...D-LISH.
We were all sick, as previously posted. Breathing capacity was taken down to nothing for me. I am going to have to totally rebuild my endurance with C25K, which makes me sad, but I am feeling much better than last week!
So, things have gone like this:
Sick family, Spread the Word to End the Word link turned into quite the verbal attack on my Facebook, Shep had his stitches out, Shep had heartworm treatment, which required a two-day hospital stay, Shep's home but can't have ANY activity for a month...I think he may need doggie Prozac soon, Scott had heart attack symptoms at church and was sent via ambulance to the hospital for an overnight stay. Ethan had his urology follow-up with Dr. Wiener at Duke- had a renal ultrasound which was horrible, like wrestling a marlin. Good news is that his kidneys and bladder are doing well! YAY! Bad news is that until Ethan can verbally tell us what he is feeling in order to go to the bathroom, we won't know if the tethered cord caused permanent damage. Ethan will need a renal u/s annually for several years.
Yes, I snuck in that part about Scott. He doesn't really want a big fuss made about it. He is FINE. His heart is fine. Chances are that he had a panic attack that mimicked a heart attack. Still, no fun and very scary for all of us. We are very thankful to our friends at church who stepped up to watch Ethan until Mary could get there to pick him up. And, of course, to Mary for keeping Ethan while I was at the hospital with Scott. We are very happy to know that all EKG results and coronary CT results were fine...no abnormalities or blockages of any kind.
Fun week! That's a BIG nutshell! LOL!
