My letter made the cut!

I wrote a letter to the editor of People Magazine back when the movie critic there gave the movie Tropic Thunder a superb critique. I rallied up friends to write as well, and mine was the one and only chosen to be printed! I am so happy right now! My sister isn't the only Van Meter to be published! HA!




I guess I do have a voice. Someone is listening. Hopefully, many people will read my letter and have their eyes opened. Here's to hoping!

Oh, and YAY ME! :-)

Sarah Palin for VP!

I have never been so excited about anything political in my entire adult life! Whether you are Republican or Democrat, I think that the selection of Sarah Palin for VP speaks volumes! She chose LIFE even after her son was diagnosed prenatally that he would be born with Down syndrome. This is a huge deal for those of us in the disability community.

I can't wait to learn more about her and I am even going to be watching the debates! (I think that part of hell just froze over a bit! LOL!)

Oh, and I'm not looking for debate and I would not vote for someone simply because they are a woman/mother of a child with Ds/white/dark haired...just like I don't think someone should vote for Obama simply because he is black. I am speaking about SP simply because I think that her exposure and acceptance of her child with Ds could mean great things for our kids.

Routine?

Ms.Mary said that Ethan had "a day". He was throwing things, hitting, and just being an all-around Booger (hence the nickname, Boog's). He was all happy this morning, so I am wondering if he is just getting back into the routine of school? Anytime he starts going south behavior-wise, I worry it's something else. Hopefully, tomorrow is a better day for him.

GI Results

We got the results from the overnight GI study today. Let's recap, shall we?

Ethan checked into the hospital a couple of weeks ago to run some GI tests, which included:

* Endoscopy
* Esophageal Manometry
* pH probe w/impedence
* Stomach emptying scan

RESULTS:


Endoscopy: Minor esophagitis found. Same as last endoscopy, so no further damage. Celiac negative (yay!).

Esophageal Manometry: Poor motility

pH probe: NORMAL! Reflux is under control with current meds.

Stomach emptying: Over 50% of 8 oz. pediasure still sitting in stomach after 4 hours (unofficial report from tech confirmed)

Now what? Ok, so since his reflux is being controlled the nissen is out. It could cause more harm than good, especially with his poor motility in his esophagus. The other surgery option to be discussed is a Pyloroplasty. It would basically make the stomach empty quicker. For now, a prescription of erythromycin. The med can speed up emptying. We tried this before, but Ethan would cry from belly pain, so we stopped it. There is another medication called Reglan, but the side effects scare the bejeezus out of me, so it is out of the question.

Another thing discussed was to place a feeding tube directly into Ethan's intestines. He can still eat and drink by mouth, this would simply allow us to give him the extra nutrients and calories that he needs without having it sit in his belly. For now, we have a prescription for Duocal Powder. I guess you just add it to food or drink.

I also got a referral for Ethan to see the endocrinologist. I had to ask for it. I hate that. Ethan is NOT GROWING. It hasn't just slowed down the past couple months, he has not grown in a year! Ok, so he has grown 1/2 a centimeter- WOO HOO! He has dropped on the growth chart down to the 5-10th percentile on the Ds chart! It is SO not ok. Weight wise, he is holding his own at around 35-36 pounds. It took lots of half & half to get him there! No more of that. Hello!?!?!? Why was I the one who had to bring up the fact that heavier stuff like that will sit in a regular emptying belly longer, so just imagine how it sits in Ethan's belly! The appointment isn't until November, but at least we are on the books!

Tomorrow, there will be a team of doctors having a pow wow to discuss Ethan's case. The team will include the surgeon and the GI docs- maybe a couple others.

I am not sure how I feel about the results. I expected most of them. I did NOT expect his reflux to be under control. That one threw me for a loop. Granted, I am very thankful that it is, I am just surprised due to some of his symptoms. I hate the idea of any surgery. The idea of a feeding tube bugs me even more. Can't really explain it right now- ask me later why it bothers me so much.

Back to school tomorrow!

Blast from the Past, kinda

I signed onto Facebook a couple of months ago. I looked to see if there were any 1971 and 1972 classmates on there because of my Dad ('71) and Mom ('72). I believe that I found one person from the Class of 1971. I wrote to her asking if she remembered my dad.

For those of you that don't know, my dad was killed when I was 3 years old and my older sister, Kim, was almost 8. I have maybe three memories of my dad and I don't even know if those are real or a figment of my imagination. So, I have always enjoyed talking with others who knew my dad way back when.

Well, the classmate wrote me back and yes, she remembered him, but not my mom (I found that kind of funny. My mom has always been strikingly beautiful- how could anyone in such a small town/school not know who she is???). She was shy in high school, but says that my dad was always very nice (that's good to know). She also scanned me her yearbook pages where he wrote to her. For some reason, I can't explain it, I cried when I saw them.



I am assuming that the woman wrote in "Van Meter" and "Van Metter" to remember exactly who Ronnie was, since the Van Metter is an incorrect spelling. I just thought that it was very sweet that she took the time to send me an actual piece of him by way of handwriting.

So, when you hear me refer to my dad NOW- as in present time, I am referring to Jeff, the man who raised me from the age of four and I will always refer to as my dad because that's who he is to me. Gets kind of confusing to some, but I also feel odd saying 'real dad' because then that makes Jeff sound fake, and he was far from a fake dad. Anywho...

He's Off...

After not going to sleep until late last night, he was up at 4am! He did go back to sleep for a little while, but his sleep disruptions have now caused him to be Senor Crankbutt.

Ethan was excited to be back at school, but that quickly came to a halt when it actually came to work. We have been doing oral exercises with the Nuk brush, but Ethan somehow thinks that the therapy should not be done at school because he threw a nasty fit. Momma prevailed though.

I think today will definitely be another transition for Ethan, but by the end of the week, he will be back in the groove of things!

Here's a quick montage of his first day...I included the missing picture from last night. That was weird...


First day of school 2008

Officially annoyed

I think that Ethan is just so excited that school starts back up tomorrow because tonight he was rotten and would not go to bed! He bolted from his room just to push his wheelchair. Scott tried to get him to go to him for a kiss goodnight- nope, he went the opposite direction. So, finally what was it? 11:30pm and he is sleeping. I have a really cute picture of him sleeping and for some reason it is not being read from my card when I put it in the computer to upload!

So, I am officially annoyed.

Pictures from home

Scott, Ethan, and I went up to Mount Airy yesterday to check out the downtown district. Scott is hoping to find a shop that will carry his items for sale. Mt. Airy is known for being home to Mayberry- you know, Andy Griffith and Ron Howard (Opie)? Lots of tourists come through the town just to visit Mayberry. I find this very humorous. Oh well, it's still a nice town that may just have the tourist market for Scott's rustic items.

We went into the Main Oak Emporium at the suggestion of a friend. Three stories of fun items. I loved the set up. It just didn't have the feel of what we are looking for when it comes to selling Scott's stuff. PLUS, they are very expensive to lease from.

Anywho, on the 2nd floor, there was a booth with framed pictures and there were a few that caught my eye...

Mariposa



This one because we always see or hear Fresno daily. Yesterday was no exception...not sure if you can see it or not (it's in blue in the lower left hand corner).


Another Fresno picture

This one is for Christine. Her family just brought a little boy from Ukraine into their lives by way of adoption. These pictures are really hard to see, but they are from Reedley.



And for those of you wondering what these places are...they are all California towns.

* Mariposa is my hometown
* Fresno is a city an hour from Merced, the city we used to live before moving to NC
* Reedley is city in Fresno County where the beautiful Reed Family lives.

I didn't see any Atwater/Merced/Livingston signs. We looked. There was also one from Exeter, but we didn't have a direct affiliation with that town, so I didn't take the picture.

V8

I decided to get Ethan some V8 juice to try. I don't want to give him a lot of it because of his reflux, but I thought some extra vegetable vitamins every now and again couldn't hurt, right? So, this is what Ethan thinks of V8.



Oh, and he HAS to bang his cup on the table before he drinks. He even has to bang it a few times throughout. This is a random habit that just came about within the past month. We have not idea why he does it, but he insists on it.

School

Tomorrow is Ethan's first day back at school! YAY! I know that he is going to be SO excited! We went to Open House last week and Ms. Mary rearranged the classroom and I think that Ethan is going to make some great gains this year! His classroom size has gone from 6 to 3, but that will likely be a good thing for Boog's since he will have much more one on one time with the teachers.

I need to clean his- I mean, the school's- wheelchair before tomorrow. It is all yucked up from Ethan slobbering all over it. Shhhh, don't tell his PT, Della!

I hope to get some pictures tomorrow too.

Playdates

I drove Ethan to Raleigh on Friday so he could have a playdate with PJ. I "met" PJ's mommy, Kathy, online through our Down syndrome support site. Kathy knew prenatally that PJ would have Ds and at the time they lived in TN, so I hoped to meet one day. Then, they moved to NC! Well, surely getting together would have come sooner than this! Oh well, I decided that it was time for a get together!

I had a meeting in Greensboro for Uppercase Living and just decided to keep going on to Raleigh. Heck, it's only another hour and a half!

We met at Pullen Park. This was a really nice park and very kid friendly. There was a train, a carousel, swings, slides, water boats, peddle boats...lots of stuff to do! We both had tired boys, but we rode the train, carousel and swings.

Ethan would reach his hands out to PJ, it was really cute! PJ was so flippin' cute! His smile should be on billboards! It was so great to take the initiative to finally meet up, especially with school starting!

I will post pictures as soon as I upload them! Thanks Kathy, Daniel, Rebecca, and PJ for the playdate!

Ok- I did not take many pictures! WHAT?!?!? That is SO not like me. Next time...until then, here's a small montage.

Make photo slide shows at www.OneTrueMedia.com

Just curious

If it's just a word, then why do you insist on using it? Surely there is another word that you could use in its place.

Shep's Playdate!

Joey's Visit

I brought Karen's new dog, Joey, home with me yesterday to play with Ethan and Shep. Ethan laughed at him from a distance and Shep just wanted to be left alone. He is old, after all. LOL!

Be A Fan

Happy Birthday, Kristopher!

Today is my nephew's 2nd birthday. He is such an adorable little boy. We hope that he has a wonderful day!!! Lots of love, Aunt Kristen, Uncle Scott & Cousin Ethan

GI Study

I just realized that I never updated about Ethan's overnight GI study from last week. Well, we had to be at the hospital by 11am on Tuesday (8/12). Ethan had to be NPO since midnight. Luckily for me, Ethan doesn't really complain about hunger in the morning, so we just stayed occupied so he didn't focus on the fact that I did not give him breakfast before leaving the house. Noon rolls around and we are still sitting in the surgical waiting room. They tell me that his OR appointment wasn't until noon, so we should be going back anytime. Sometimes, I think that they forget that you have had a child NPO for over 12 hours!

We finally go back to the PACU a little after 12:30pm and he is wheeled away from me,like a big boy, around 1:10pm. I hate, hate, hate it when I can't be with him anymore. But, the OR is pretty firm on the NO MOMMIES ALLOWED policy.

The doctor came out around 1:45pm and said that the endoscopy went well and that he didn't see any damage to his esophagus or intestines. So, that's great news. He then says that his nurse was putting in the scope for the esophageal manometry. I was told originally that this phase would only take about 20 minutes. After that, they would put in the pH probe (with impedance). We have had the pH probe done a couple of times before, so I knew that didn't take long- I expected to be called back to PACU in no more than 40 minutes.

TWO HOURS LATER: "We are ready for you now". (What took so long???) Out of the PACU, Ethan is being wheeled on an adult stretcher. He is obviously drunk on some sedative. He tries and tries to lift his head, only for it to fall back down. It was actually quite comical. But, he did manage to still give his worried Momma a kiss so I knew he was ok.

So what took so long? Apparently, no one read his three-foot thick chart that says that: 1) anesthesia wears off very quickly with Ethan 2) he has the strength of ten men and 3) he magically develops 3rd and 4th arms that will attempt to yank IV's out and probes up his nose out. Yes, he woke up during the procedure, went mad, started yanking IV and probe out, and swinging at nurses. Due to this, everything took longer and they gave Ethan another round of versed to help him "chill".

Once we were upstairs in our lovely hotel, I mean hospital, room, I tried to get Ethan to drink some juice without any luck. I figured that he would be so thirsty/hungry since by that time he had gone about 20 hours without anything to eat or drink. They did have him on an IV drip, so hydration really wasn't much of an issue, but with the issues we have had with him eating lately, I was so afraid that he wasn't going to eat anything for a while. Well, I finally bribed him with pudding and lots of it. He ate FIVE puddings and almost two yogurts by the time he went to bed. His belly was still full by the next morning.

We got up the next day, after a night of NO sleep! Ethan was tossing and turning, all while wrapping his IV line and probe wires around him, so I had to untangle him all night. When he did toss and turn, he was hitting me with his arms, which were still in arm restraints, so I felt like I had been beaten with a log all night long! Anyway, our next test was the stomach emptying scan. We have done this test a couple of times too, so I knew what to expect. Since Ethan won't eat the radioactive egg sandwich, we have to use a can of Pediasure instead. Long story short, after 4 hours, Ethan still has HALF of an 8 oz. can of Pediasure sitting in his belly.

Now, I wondered if he still had a bunch of pudding still in there, but there was no way to tell. The only thing that I know for sure is that his results were similar before, so I will have to assume that the pudding was not an issue for accurate results. Of course, this result was unofficial since it was not the doctor telling me.

We go back in next Tuesday for all of the results. I fear that the doctor is going to tell me that we need to proceed with the nissen with partial pylorectomy. This would mean an automatic G-tube. It is all very discouraging, but if it means better things for Ethan, then we will do it. Ethan is NOT growing. This could be due to the lack of nutrition actually being absorbed into his body. I guess we will just have to wait and see what Mr. GI Doc says next week!

Here's an "R" word for ya!

Special thanks to the Arc of Virginia and the Arc of Northern Virginia, plus Blueberry Shoes Productions for putting together such a great presentation!

Did anyone else notice that the very first picture is little miss cuteness herself, Payton?!?! (that would be Ethan's crush from last year's convention!)

Birthday wishes!

Ok, so I forgot to finish this post yesterday! OOPS!!! Yesterday was an important day for two of our friends: Lynda- my best friend from high school AND Maid of Honor in our wedding, and Mike- Scott's best friend from childhood and Groomsman in our wedding. So, HAPPY (belated) BIRTHDAY to my bff Lynda and Scott's best buddy, Mike! We miss you!!!

And, because I am too lazy right now to get out the wedding album with better pictures of them, this is all I could do..




AND, it was our Shep's birthday too!!! Shep turned TEN yesterday. Our puppy is getting old. Poor thing has hip dysplasia and arthritis, but he is still the lovey puppy that he has always been.

My NEW website!

I now have a new website for Uppercase Living! You don't have to log in with a demonstrator ID or token anymore!!! Now, all you have to do is go to:

My new UCL website, Click here!

Tell your friends!!! I need the business! *muah*

Smiles & Giggles

Ethan LOVES to play with his daddy!




These are the glasses that Specs4Us allowed us to borrow from the NDSC convention. We still have to keep the arm restraints on in order for him to not rip them off. I may have to send back the frames. :-(