Ethan's eye color changed after chemo, so I LOVE to look back on these shots of him with his pretty blue eyes. I also love the little drop of drool on his chin because I know that he was teething and it took him forever to get teeth, so that drool was welcomed at that time. I am perfectly ok now if it wants to go away, LOL.
Ethan konked out one night after dinner (see sweet potatoes on his face) while drinking his bottle. This happened only a few times. I thought it was the sweetest picture. And, look at those lashes!!!
Greeting me first thing in the morning. He had "Ellie", his stuffed elephant with him. Ellie was the only stuffed animal that Ethan was ever really attached to. We still have her even though her tail is so flat from Ethan chewing on it. Scott has tried to throw it out, but I can't let him yet.
Tomorrow, I leave VERY early to head to Orlando, Florida for the Juice Plus+ Conference. I am very excited to learn and share! I am NOT excited about having to get up at 3am in order to make my 5:20am flight. I am also excited to *hopefully, prayerfully* be seeing my good friend Mark, who went to Africa with me.
I have set the next couple of days to post some of my favorite pictures of Ethan from when he was smaller.
And, for those that are totally interested in the "cleanout"- um, yeah...Miralax does not work for everyone. I will have to try again when I get back home.
For the "massive movement" to happen. We've dealt with some, but not nearly enough. C'mon Bubs, Momma has stuff to do before leaving for Florida on Wednesday!
I don't usually find myself wanting to discuss these topics on a public forum, BUT it very well be an issue that another family is facing and that is why I am going to put it out there.
For the past 2-3 months, Bubs has been having some poop issues. I'm talking blow out, have to change the sheets and clean the carpet blow outs. They were only happening in the morning, for the most part, so we were puzzled. Pediatrician sent a stool sample to the lab and it was negative for any bacteria/viruses. Hmmm...
I got Ethan back in with his GI doc this past Thursday. He had an x-ray taken of his tummy and we discovered what is happening...
Did you read that caption?
Yeah, that's a whole lotta poo. A whole LOTTA poo. Oh.My.Word. That's a lot of poo. *sigh*
So, this could be a low motility issue, or a slow motility issue, or a tethered cord issue, or all of the above. All I know is that Bub's will now, likely, have to be followed regularly to make sure he is emptying enough.
Bowel cleanout here we come! Ugh. 32 ounces of gatorade with 7 capful's of Miralax over 24 hours and wait for the poo to start coming. I can imagine this being a headache with a child that IS potty trained, let alone a child that is NOT potty trained!
This is not my idea of a fun time, but it has to be done and with me leaving for Florida on Wednesday, it needed to be done on Sunday.
We gave him his concoction and waited...and, waited...and, waited...and, waited some more. Nothing. This is about to get ugly...
Two years ago, I boarded a plane to start my journey across the world. Almost 24 hours later, I landed safely in Nairobi, Kenya. I was in three countries on three different continents in a matter of a day. I never in my wildest of imagination would have ever found myself in Africa. It was a total God thing- truly. And, I am forever grateful for that calling. Because, I got to meet some of the most wonderful people, make some new lifetime friends, see the most amazing view of the Alps, cross the equator, see monkey's and giraffe's and antelope and flamingo's, and many other wild creatures in their natural environment, see for my own eyes the poverty and destitution of a third-world country, ride on a piki-piki, and most of all- love on some amazing kids.
Some day, I know I will return to the beautiful Kenyan country and love on these kids again.
Last night, we went to dinner with Mary and her friend, Andy. Ethan had such a full day at the fair and he didn't nap like he was supposed to, but he was still a really good boy at the restaurant. At the end of the meal, Ethan kept making a gesture toward his mouth and it was different than anything else he has ever done. At first, I thought it was his way of showing us his nose (we are really working hard on body parts), but then Mary suggested that he may be signing for ice cream. After a few questions, sure enough, that boy wanted some dessert! He continues to amaze me. He is so smart and he never gets the credit for what he knows. That is so frustrating for me as him Momma.
Anywho, Ethan will likely be signing "ice cream" all the time now, but since he was just under 45 pounds at his doctor appointment the other day, I am guessing we will have to switch him to sherbert. LOL.
Every year, the Wednesday during the week of the fair is "Special Education Day". This has been a field trip that I have taken with Ethan and his classmates since we moved here. Even though we have been doing this field trip for a few years, today was different. Today, Ethan was honestly engaged in the activities.
First up was watching the Pets Overboard show. We had a good place for viewing and he watched the entire show! Usually, he will be fiddling with things in his lap or looking around instead of the actual show, so this was a BIG deal for me.
We saw Ethan's classmates from previous years and previous teachers, too. One student, in particular, came running up to me and Ethan in an exhibit hall. She was so excited to see us, and Ethan was excited to see her! You can really tell in the picture I got of him giving her a hug (I will add later). I love those bonds that have been made with Ethan!
We had lunch and then the rest of the class had to get back to the bus, but I just kept Ethan with me. I met up with The Bucknall's (DP's parents and DP herself) and we went on the search for the Krispy Kreme Burger. Yes, I just said burger. Two KK Original glazed donuts with a burger and full fixin's in between. Now, Karen gave a review of "KK burger is DA BOMB!" so I was curious. I was not curious enough to buy my own, but I would agree to taste it if someone else bought it. Richard bought it, full with cheese, bacon, lettuce, tomato, and onion. I took the first bite (very messy, btw) and have to say that I was not as impressed as my dear Karen. Blech is more my reaction and Jamie's too, but Richard thought it was pretty good. To each his own, I guess. Where else can you get away with eating such heart stopping foods than the fair?
Anywho, I put Ethan on the swings and another little ride and he did GREAT! I took him down the Super Slide while racing Jamie and DP. I had a blast with it, LOL.
Overall, it was a great day with my boy!
Today was "the" meeting- the meeting that I have been gearing up for over the past couple of weeks; the meeting that positively made my blood pressure rise; the meeting that had me in tears for days; the meeting that had me on the phone for hours to different advocacy people; the meeting that had my Mama Bear claws on high alert; the meeting that I, jokingly, told friends to have bail money ready for.
Well, the good news is that bail money is not necessary. I went out and bought a digital voice recorder to record the meeting. The GREAT news is that I have it recorded that Ethan is making PROGRESS and is IMPROVING!
The recommendation by school administration was to move Ethan into a different classroom at the same school. I was led to believe, previously, that this specific classroom would not be an option for Ethan, so I am willing to pursue the idea and observe the classroom along with our case manager on Monday. We will see how we feel about moving him at that point.
Thank you to all who prayed that you wouldn't get the bail money call and kept me in your thoughts during this meeting. I could feel it, as I didn't even cry! Update on Monday...
Today, I finished installing a custom Uppercase Living expression over some kitchen cabinets. It is a project that I have been working on with the customer for a couple of months now, and today I finished it.
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| Always remember wherever you are, whatever you do, to the world you are one, but to me you are the world. |
Today, we had the great pleasure of being invited to a luncheon with some other families that have children with special needs. We were the only ones with a child with Down syndrome, but it was the most connected that I think I have ever felt within a group of people!
I have always wanted to get Scott connected with other Dads out there who have a child with special needs, but also share his interests. Since Scott's main interest is soccer, it has not been an easy task! I am optimistic that some of the men from this group of people today will be what Scott needs...yes, many love soccer! ☺
We had the best time, and it was so nice to be surrounded by others that "get it".
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Welcome to October!
Many know that October is Breast Cancer Awareness month, but did you also know that it is Down Syndrome Awareness Month? Wellllllll...it IS! ☺
Once again, I am participating in Unringing the Bell's annual 31 for 21, which is a bunch of bloggers that have made the committment to blog everyday of October for Down syndrome awareness. All of the posts do not have to be about Down syndrome (Ds). Our life does not revolve around Ds, but there are definitely some different challenges that we face because of it. I will try to write about the mix of both and in between.
So, today I challenge you to smile because you have someone with Ds in your life! If you don't, just look at this precious face- I guarantee you will smile!
My friend, Michelle, called me early the other morning. She proceeds to tell me that her daughter, Kayleigh (she took the Reflections pictures of Ethan), wanted to do her AP English paper on the "R" word. The topic had to be controversial and she would have to persuade the reader that her opinion was the right one. The "R" word topic seemed perfect! Until, her lovely older brother chimed in. "You can't do that." Um, ok...why not, Devin? Because that is what I wrote my paper on last year for the same teacher, and I got an "A".
Needless to say, I was in tears. Good tears, of course. Michelle said the sweetest thing to me that morning: "You have no idea how much of an impact you and Ethan have had on my kids".
What is so amazing to me is that Devin wrote this paper without telling anyone. He didn't look for recognition or praise. He did this from his heart. He had enough conviction to go against the norm of society, especially teenage society to stick up for what's right. Ethan- my darling, wonderful, loving, son- taught him.
I offer to you, with permission and great pride, Devin's paper.
This I Believe
By: Devin Lyons
13 December 2009
To many, a word is just a word, used to communicate one’s thoughts, ideas, and knowledge to another, nothing more. Hardly ever does one stop and think of the true power of words. Everlasting encouragement in times of need, the passing on of crucial information, saying a first hello and final good-bye to a loved one, all given such powerful influence based upon the words used. The choice of one’s words can sway mass amounts of people in their thoughts and can even move some to tears. Words can also discriminate and cause anger and hatred among people. They can be used as slander, cut our enemies down, and ruin a lifelong reputation. I believe that many people in this age have become too comfortable with some words which offend many others, which deliberately disrespects others by refusing to try to comprehend why they are offended by these words and instead conforming to a single-minded state of being. These words used by many very causally as a joking term can be a figurative slap in the face to others who have dealt with the literal subject. I believe that in a world with an endless amount of words and phrases that we should be obligated as descent human beings to take the route we know will not offend or spark conflict.
I used to be one of those kids who would always speak without thinking, not caring what words I used and how they truly affected those around me, whether I was speaking or referring to them or not. The term “retard” itself was probably one of the most common words in my vocabulary, which makes sense considering the stupid things I see on a daily basis because of some of my friends’ actions. This specific word is what changed my views on speaking due to a courageous little boy and his mother.
“Haha, yeah we always do retarded things like that.” That sentence still sticks out in my mind like a sore thumb. To many people, it seems like a simple enough sentence, seemingly harmless, used only to describe a healthy friendship; or at least that’s what my single-minded brain thought at the time. But this time, a mother put her two cents in. In a very frank message, she explained her story concerning her son. He has suffered and survived a three-year bout of leukemia, back surgery, almost debilitating ligaments, and also has autism and Down syndrome. Oh, and he’s also only eight years old.
In this message she explained, quite frankly I must add once again, how the term “retard” is not only an insult to her and all others who are medically diagnosed as “mentally retarded” but her son as well. When we use this word, she explained to me, we not only infer that these mentally handicapped kids are stupid but present the idea that they are incapable of doing anything smart or praiseworthy in their lives. Her last statement to me on the subject was “Hasn’t my son been through enough in his life to not have to worry about people making fun of him for something he has absolutely no control over?”
One single word caused this. One single word, spoken one time. I hadn’t meant it in this meaning, but that could never control the outcome. How many times had she heard this hated word in this context? Five? Ten? One hundred? More? Her son, who had been through more in eight years than most people will ever encounter their entire lives, had made it through the physical trials of life, but now was being subjected to a stereotype in which he was better than. His mother saw him struggle through one of the most deadly forms of cancer, back and ligament problems, and watches him grow up apart from normal kids because he cannot speak and communicate due to his mental conditions, and they are strong enough to push through. However, the words we use to speak of extreme stupidity which are the same words which characterize her son’s condition have enough power to draw her to tears.
There is no justification for us in choosing words we know will negatively affect others. In the world we live in, we have countless numbers of words to describe basically the exact same thing. So why do we choose to use a word over and over again that may hurt another when there are tens of other words or phrases that get across the exact same message? I believe that it’s one of the ultimate forms of disrespect to use words we know will lead to another feeling offended. Although some people view this as people being too sensitive to a simple word, words are what dictate the world. Each person in this world knows that there are some things that if they would hear, they would go off. This is the exact same situation that I am speaking of. That sentence, that phrase, that word, it just makes us lose control of our emotions for a split second, no matter if the speaker meant it to be offensive or not. It causes superfluous anger and hostility into an already volatile world. Choosing not to avoid this effect by simply changing a few words just because you don’t care what how other people may react or be affected is extremely disrespectful. If there’s such an easy way to avoid conflict or making another feel offended right in front of us, I believe that it’s only descent and respectful to everyone around us to take advantage of that.
Scott was looking at the atlas the other day and noticed that Atwater, CA (where we moved from) looked like it was the same latitude as Winston-Salem, NC (where we live now). So, I looked it up via trusty Google and sure enough, they are pretty darn close!
Atwater: 37° 20' 52" N
Winston-Salem: 36° 5' 59" N
So, basically we moved STRAIGHT across the country.
Random, yes, but that's how we roll...
I have some exciting stuff to share!
NEW! Exclusive Halloween Welcome Kits
Ethan didn't go to school on the actual first day of school because he had an appointment and I didn't want to mess with the first day of school- it was a new school/teacher after all. Well, that may have been the wrong idea because he was in the worst of moods ALL.DAY.LONG. Finally, I asked him if he was mad because he wasn't at school and he immediately signed, "YES!". Oooook, then....
When I woke Ethan up at 6am yesterday morning, he popped up signed "YES!" when I asked if he was ready to go to school. Um, so I think the boy wanted to go to school, what do YOU think? LOL
My Mom bought Ethan his new super-cool backpack (look close- the camo is actually skateboards!) from Potter Barn Kids and I topped it off with the matching lunch tote. I think the backpack is perfect size for him! And, he is just too flippin' cute.
We got into class and Ethan was, obviously, ready for Mom to leave so he could go about his day. I didn't get any calls, so it must have gone fairly well. That is, until the last 15 minutes of school. Apparently, they had a fire drill, so Ethan was placed under the shade tree outside so he wasn't in direct sunlight. Something happened while out there. He either got bit/stung or he had an allergic reaction to pollen/poison ivy or something outside.
When I got to school to pick Ethan up, his face was breaking out in hives and his right eye was almost swollen to the point of being completely closed! I looked at the assistant and asked what happened!!?!?!? She hadn't noticed. This led me to believe that this reaction was happening fast, so I zipped him down the street to his pediatrician to make sure his airway wasn't swelling up too.
Luckily, his heart rate/pulse was good, so Ethan was given Benedryl and then monitored for about a half hour. Boy, that Benedryl was a miracle drug! It kicked in fast! The swelling in his eye was cut in half by the time we left. We left the office without a clear answer of what Ethan was having a reaction to, but the doctor was on-call for us if we needed.
I put Ethan down to rest once we got home, but he woke up not long afterwards crying. Ethan's pain tolerance is so high that when he cries, something is really wrong. He cried for over an hour and he won't let me comfort him. It is one of the most heartbreaking things- to have a child who does not want you to comfort them when they hurt. It is like he goes into his own survival mode of having to do it himself. One day, I pray, that he allows me to comfort him when he hurts...
The Benedryl was wearing off after only 2 hours and we couldn't give it to him again until 4 hours had passed, so we had quite a few episodes of misery last night and today. It was a looooooooooooooooonng night.
Ethan did not get to go to school today. :*( He got to stay home and have Mommy monitor his swelling and give him Benedryl around the clock. I went and got some Zyrtec eye drops tonight and I am hoping that they will do the trick for him to be able to have a good night's rest and better day tomorrow.
I really hope this is not a preview of how the year is going to go!
Overall, GREAT news! Surgery was a success!
Ethan's Central Apnea episodes went from 98 to TWO! His OSA episodes were minimal, but still there. He did not have any oxygen desaturation lower than the 90's, which is great!
Because the obstructions are still present, just not causing as much havoc, we will have to repeat the study again in a year to make sure that we can remain CPAP/BiPAP free. Ugh and Woot.
Truth be told, I am in total denial that my oldest nephew turned 17 years old today. I mean, really? It was just yesterday that I was waiting in the waiting room along with the rest of the family anxiously awaiting Sebastian's arrival. I will never forget, the delivery room had a small window, and me, Kim's bff, my grandma, and my cousin all crowded that little window in order to see when Sebastian was born. It would have been great to get a picture of that from the inside, LOL.
Sebastian and I have always had a special connection. I have watched him overcome some significant medical obstacles and grow into a young man. Kim wrote a very touching article for her column this week- you can read it HERE.
So, HAPPY BIRTHDAY, SEBASTIAN!!! We love you very much! Continue to make us proud. We miss you! *muah* ♥
Seeing a friend from last year! {So sweet}
