Family Day @ Victory Junction!

Today is the annual Brenner Children's Hospital HEMOC Family Day. It will be held at Victory Junction Gang Camp.


Today, we gather with other HEMOC families to celebrate our children's achievement over cancer. We met at VJGC last year as well. Ethan was able to ride a horse, make arts & crafts, and putt-putt golf. We now have a bowling alley too!

Victory Junction is a fabulous camp. If you are able to volunteer, I highly encourage you to! If you are able to contribute by donating, that is even more fabulous! VJGC is free for all families who attend camp. It is also a member of the Hole in the Wall camps founded by Paul Newman. They are doing amazing work- won't you be a part of it? ;-)

Sleep study ... Never again... I hope!

Ethan had his sleep study last night. The last study Ethan had was when he was in the middle of chemo treatments, accessed to his port, and then add all the wires to him = NO FUN. Plus, Ethan kept pulling the canula out of his nose and they kind of need that to monitor his breathing! Scott was the one to tackle that test and swore that he would never do it again. I now know why for myself.

Thank GOD that I took his arm restraints! You know, I really hate using them, but they are there for a reason. They don't keep Ethan from moving entirely- he can actually still figure out how to bend his arms! As the tech's were trying to glue the electrodes onto his head, he snapped back (while restrained) trying to grab the tech's hand off of his head. Well, the only problem was that he grabbed his own lip instead and ripped a chunk out of his cheek! Oh my goodness, it poured blood. It was awful! The bleeding didn't stop for close to ten minutes. For a minute, we all thought we would have to detour to the ER!

When we finally got him all glued up and ready for bed, this is what he looked like- and, it only took him a little over a minute to zonk out. If only he stayed zonked out!!!



It was a rough night. He would wake up crying, wanting to get to his stomach, but because he couldn't, he immediately tried to rip off the canula and wires. We did this ALL night. My right hip and shoulder were hurting from being in the same position trying to keep Ethan comfortable, but to where I could grab his arms if he started to move. *sigh* The things I have to put him through...bad mommy.

The tech was super nice. He said that he stopped the study at 4:30am when Ethan did manage to unhook a couple of wires. He said that he got enough data by then, so it was ok to stop. He was very nice to allow us to "sleep" until 5:30am! LOL!

Ethan and I got home at 6:15am and immediately went back to bed- in the comfort of my warm, comfy bed. It's 10am now and I am going to take him to school. He's a happy camper. Go figure. Hopefully, he has a better day today than yesterday!!!

Sleep study tonight!

UGH. The thought of it makes me dread going. I did get Ethan's hair cut last night so that it will be easier to get the wires hooked up to him (hopefully!). He woke up around 5am this morning, had Vitalstim, and went to school. I got a bad report when I picked him up. :-(

Ms. Mary said that Ethan had been pinching, pulling hair, swatting, and even attempted to BITE her once! He even pulled his friend, Abby's, hair! I feel so bad- she and her brother, Austin, think the world of Ethan and I just hate that Ethan was mean to Abby. (I AM SO SORRY ABBY!!!)

I think a lot of this behavior was brought on by fatigue. We weren't even out of the parking lot at school when I saw his eyes rolling to fall asleep, to which I yelled "ETHAN, WAKE UP!!! NO NAP TODAY!". Ok, how often are you going to hear me say no nap??? Not very often, that's for sure.

I really need him tired for tonight. The last sleep study he had, the results were "inconclusive". Gotta love that. Here's to better results!

Rock Star

You should all know about my friend, Bethany by now. She owns an online boutique called The Polkadot Platypus. As a fundraiser for her family's adoption cost to bring Addison home, Bethany sold raffle tickets to win $100 from her boutique. I WON!!! I never win anything! LOL!

Well, I tried to donate it back to Bethany, but she wasn't having any part of that. Love her, but man is she stubborn! :-) So, after twisting my arm a bit and forcing me to use my gift certificate, I decided on a few things.

1. Baby legs for Ethan. They are great to wear under pants. I loved the idea of having an extra layer for his legs without interfering with his diaper. LOVE them!

2. Baby K'Tan carrier. I know what you're thinking...Ethan is too big for one of those. And no, we are not announcing anything smaller than Ethan to fit in the carrier! Sometimes, when Ethan will not walk, he will become floppy AND heavy. The Baby K'Tan is strong and basically adds a little extra support under Ethan's booty if I need to carry him on my hip. He hates it so far, but I will keep trying.

3. A rock star shirt. It is a simple black, long-sleeved shirt with the word ROCK and then a star underneath it. I got this stuff over the summer, so I have been waiting to be able to have Ethan wear his rock star shirt! Well, he looks great and he got SO many compliments! He IS a little rock star!!!



Thank you Bethany for all the goods!!! We are praying that you will have Addison here in the US before you know it!

October is Down Syndrome Awareness Month!

Unringing the Bell is hosting the 2nd annual 31 for 21 blog challenge. I did not get to participate in it last year because I didn't know about it until close to the end of the month. My blogging habits were still sporadic and I just wasn't sure I would have enough to talk about. The challenge will be to blog for all 31 days of October. I will have to figure out how to schedule a post pretty soon since I leave for Africa in a week! My internet access over yonder will be extremely limited.

Anywho, I have lots to say TODAY, but I will try and break it up so I don't lose steam for the entire 31 days! LOL!

Happy Birthday, Kim!!!

I would like to wish my (older- hehe!) sister a very happy birthday today! Isn't she pretty? In honor of Kim's, eh hem, Kimberly's, birthday, below are the book covers to all of her books! If you hurry, you should still be able to pick up her latest, "An Imperfect Match". I do believe that you can also purchase her books on Amazon. Hint, hint- wink, wink- nudge, nudge...

Eat @ Chili's Tonight!

All day today, Chili's will be donating 100% off all proceeds to St. Jude's Children's Research Hospital!!! Ethan was not treated at St. Jude's, but the work that is being done there is truly remarkable! While Ethan is in remission, he is NOT cured. He only has 80% chance that his leukemia will never return. Sounds like a good odd, right? Well, I think that 100% is much better!

Come out to support the cause! We will ALL celebrate when pediatric cancer has been rid from this earth! Wanna create a pepper? Click here! If you create a pepper in Ethan's honor, let me know so I can post it here! Thanks!


From Ethan's Aunt Kamrin

















From my friend, Christina
















From my friend, Kimberly

















From Ethan's Gramma

What's one more challenge?

Today, we met with "The Wizard". Long story short, Ethan now has another diagnosis...PDD-NOS. Click on the link to learn all about it, but yes- it is a form of autism.

I am crushed, heartbroken, and angry- among other things. When does this beautiful boy of ours just get to be a kid? Where does this leave our family? Will we never have more children? Will Ethan EVER communicate effectively? Too many questions, too many emotions. All of this on the heels of the tethered cord diagnosis (Neurosurgeon consult 10/20). I'm spent.

*sigh* I guess I just need to sit back and just remember that this does not change who Ethan is. He is still my son, my baby, who I love more than life itself. I know that God won't give us more than we can handle, but really- could He quit trusting us so much already!

FIREPROOF

Yesterday, Scott and I were blessed. Our church-
River Oaks Community Church arranged to reserve an entire movie theatre showing the movie, "Fireproof". The church provided childcare so that any couple could attend the movie.

We knew that the movie would have an obvious Christian storyline. Kirk Cameron is the star of the film, and I think most people know that he is pretty vocal about his love for Christ. While the acting was not Oscar worthy by any means, it did pick up and there were some "definite get your tissues" ready moments. The movie is funny, while acknowledging the struggles that so many married couples face and the pit of despair that they fall into that leads to separation and/or divorce.

Marriage is work. Our likes change. Our personalities may even change. Nobody ever said that marriage would be easy or without conflict or struggles. But, when you make it a point to realize that you cannot do it alone- you need God's love in your marriage too, you CAN make it work.

It may seem cheesy to some of you, but seriously, watch the movie. Whether you have a blissfully happy marriage or a marriage teetering on breaking, see the movie. Reconnect with your spouse. Look into their eyes as if it were your wedding day and you are getting ready to exchange your vows. Don't get too wrapped up in life to forget about those who mean the most to you. Lean on God when times get tough. With prayer and work, He will see you through it.

Kennedy-Brownback Bill

FOR IMMEDIATE RELEASE

The Down Syndrome Community Celebrates an Important Victory
Congress Passes the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act

New York, NY (September 26, 2008). After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosis Conditions Awareness Act, during this last week before Congress adjourns . The legislation has been an extremely high priority for the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). These organizations and individuals with Down syndrome and their families across the country are convinced there is a need for physicians and other health professionals to provide parents who receive a prenatal or postnatal diagnosis with updated, evidenced-based information about Down syndrome.

U.S. Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), original co-sponsors of the bill, came together to pass S. 1810. The bill passed the Senate by unanimous consent on September 23rd and passed the House by a voice vote on September 25th.

The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The information that is all too often being provided in these situations is out-dated and inaccurate. The treatment options, functional development, opportunities and accomplishments of individuals with Down syndrome have improved dramatically over the years, yet decades old stereotypes still persist. It is critically important for healthcare professionals, families and society to update their knowledge and their perceptions about individuals with Down syndrome.

NDSS, NDSC and affiliate groups across the country, have worked for almost three years to bring the bill to passage. J. David Hoppe, NDSS Governmental Affairs Committee Chair, worked tirelessly with Members of Congress to ensure the bill would be considered despite competing time demands in Congress. "With one small eight-page statute we have the power to brighten the future for people with Down syndrome and their families, by breaking stereotypes and dispelling myths", states Hoppe.

NDSC and NDSS and appreciate the hard work of the Members of Congress who championed the bill in the Senate and the House of Representatives-Senators Edward Kennedy and Sam Brownback, Congressmen James Sensenbrenner and Tim Ryan.

Other members of Congress who provided invaluable assistance and support- Senator Harry Reid, Speaker Nancy Pelosi, Majority Leader Steny Hoyer, Senator Mitch McConnell, Congressman James Clyburn, Minority Leader John Boehner, Congressman Roy Blunt, Congressman John Dingell, Congressman Joe Barton, Senator Jon Kyl, Congressman Pete Sessions and Congresswoman Cathy McMorris Rodgers.

NDSS and NDSC would like to thank the members of the Trisomy 18 Foundation and their leadership who were diligent and stalwart supporters in the effort to pass the bill.

NDSC and NDSS would also like to thank their affiliates and the thousands of individuals with Down syndrome, parents, families and friends who have worked tirelessly during the three-year effort to pass the legislation.

About NDSS
The National Down Syndrome Society is a nonprofit organization with more than 250 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. To learn more visit our new website www.ndss.org.

About NDSC
The National Down Syndrome Congress is America's oldest national organization of individuals with Down syndrome, their families, friends and the professionals who work with them. NDSC works to promote equal rights and opportunities for individuals with Down syndrome through advocacy, information and education. The NDSC also hosts the world's largest annual gathering of teens and adults with Down syndrome, as well as parents and professionals. For more information, please visit www.ndsccenter.org.

Buddy Walk Awareness on Today Show

While I hate that Meredith Viera and Ann Curry kept saying "Down child", John C. McGinley (from Scrubs) has always been a fabulous advocate for our kids and he always beams when he speaks of his son, Max (11, Ds).

Our local Buddy Walk is tomorrow! It is supposed to be cold and rainy, so we are still hoping for a good turnout!!!

Happy Birthday, Ang!!!

Happy birthday to you!
Happy birthday to you!
Happy birthday dear Angela!
Happy birthday to YOU!!!

We love and miss you SO much! We hope that you had a wonderful birthday! I know that I cannot wait to be able to see you again. It has been way TOO long. Oh, two years too long now. :(

Spinal MRI results

Tethered Cord. Being referred to the neurosurgeon.

I thought I was prepared for this. I so was not...

I will update when I have more information.

Brain MRI results

I am not sure what to make of them. We have two "non-specific" findings.

ONE: Ethan has more spinal fluid at the base of his brain. It is possible that his cerebellum is smaller and that is the reason for the extra fluid. If this is the case, this could be a reason for development issues, like balance. The doctor asked me if Ethan was clumsy or all over the place. Why yes, yes he is when he is walking one-handed. Hmmmm...

TWO: Ethan has frontal lobe lesions in his white matter of his brain. Doctor asked me a few questions like, "Has Ethan ever had any other procedures where something was injected into his spine besides the chemo?" NO. "Did Ethan have radiation?" NO. Hmmmm...

Apparently, these spots are seen in adults but not in pediatrics. Leave it to Ethan.

There was nothing acute shown- nothing new. What does this mean? It's information worth a whole lotta nothin' at the moment. The two findings are not related (to his knowledge and this doctor is affectionately referred to as 'The Wizard'). We have an appointment with "The Wizard" on Monday, so I am sure we will touch base more then.

And, since we have brain results, I know that the ortho. has the spinal results. I do believe that Ethan and I will be making a drop-in visit tomorrow morning after Vitalstim....

Eye update

All Smiles Again!

So, I ended up taking Ethan to his regular eye doctor in Greensboro on Monday. The corneal abrasion was confirmed and we were sent along our way with a new eye drop prescription (Acular) and a return appointment for Wednesday (today).

Yesterday, we saw a lot of improvement. He was actually able to open his eye without looking like he was in pain. That poor lid was so swollen!

Today, it looks even better. The doctor says that the corneal abrasion is gone but the regrowth cells still need more time, so we still have to do the ointment for a couple more days. (knock on wood) I think that Ethan would rather get a shot of chemo again rather than have to have one more thing put in his eye!!!

I get the feeling that his doctor gets beyond frustrated with Ethan because he screams, kicks, fights, cries...TV/Disney movies don't phase him, nor does Momma telling him that it will "all be ok". I had to hold his legs and arms while a tech held his head still, but the little wiggle worm that he is has a freakishly strong will and his will was to not let anyone near his eye!!! The doctor looks at me and says (you'll love this), "Um, the whole point of holding his legs is to keep him from moving". Yes doc, I understand. I just enjoy putting my son through torture he doesn't understand for kicks...that's just the kind of mom I am. I mean really...what the heck was he smoking when he said that?!?!?

Oh well, we don't have to go back until November...

WHY?

Do the batteries to the smoke alarm ALWAYS decide to die in the middle of the night????? Beeep.............Beeep...............Beeep............Beeep!!! Grrrr... of course, Scott was likely more annoyed than me because he's the one that had to get up to fix it.

Prayers for The Balsis Family

My friend Bethany and her husband, Kyle, leave tomorrow for Russia! They are adopting a little girl, who they will name Addison, and they will get to meet her for the first time this week! Addison has Down syndrome and is so lucky to be becoming a Balsis! You can read their adoption blog here.

Over at The Mom Crowd, a raffle is being held in order to raise money for Addison's adoption costs. The raffle has over $2000 in prizes! Each ticket is $5- not too shabby of a deal if you ask me! Plus, you will be helping bring home a beautiful little girl with Down syndrome to her forever family! But hurry! The raffle closes on Wednesday 9/24!


Please pray for the safe travels of Bethany & Kyle. Also, the peace of mind to them as they will be leaving their other two children, Mason & Payton, in the care of others while they travel to Russia. Thanks!

Doing a litte better

Ethan and I took a very long nap this afternoon and he seems to be doing much better. He still looks like he took a punch, but he is not wanting to rub it nearly as much, so I am assuming that means that the corneal damage is healing. When I go to put the ointment in his eye, it is still fire red.

I spoke with his opthamologist this morning and he called in some atropine. We were not able to get any numbing drops. Apparently, they will mess with the healing process = bummer. The atropine would basically take a little of the soreness away. Hey, anything that helps! His dr. also said that he should be seen tomorrow. Whether I take him back to the Baptist or to Greensboro is my big decision at the moment. I guess I will make that final decision after I see how Ethan looks in the morning.

He's Miserable

After the trip to the ER yesterday, we were given some eye ointment and sent along our merry way. But, as soon as the numbing drops that the ER put in wore off, he has wanted to rub his eyes ever since. He looks like he went a round with Mike Tyson- poor baby. He has not slept in a couple of days really, which means the same for me. I have paged the opthamologist to see if we can get some numbing drops called in to help with the healing. We have his arms in restraints with socks over them to try to keep him from rubbing his eyes. Poor baby is miserable.

And, those scratches on his cheek? Those are from his resisting the numbing drops in the ER yesterday. Ethan has the magical talent of growing arms and needing to be held down by 4 adults in order to put drops in his eyes. He is beat up! :-(

If you could say a prayer for him, we would appreciate it, thank you!

Trip to the ER

Today was supposed to be filled with apples and corn dogs. We had planned on attending the Apple Festival this morning and then taking Ethan to the Central Carolina Fair in Greensboro. Instead, he woke up upset with a 99 temp. Now, 99 is Ethan's 101 so I gave him a dose of Tylenol. He calmed down, but would still have random bouts of crying.

When I could finally see him (it was 5:30am when he woke up and it was still dark), his left eye was still running and poofy. He kept rubbing his eye. Scott flushed it out with some warm salt water and he was still acting like something was really bothering him.

I called the MRI center since I had talked to them last night about the drippy eye. They felt that it was not related to the sedatives or contrast that he was given and that it was likely a coincidental case of conjunctivitis and that I should call the primary care physician. So I did. I left my call back number after the tone. Their message says that I would get a call back within 45 minutes. Um, right. An hour and a half later, I called back. The nurse tells me that they are closing in a half hour, so I need to take Ethan to the ER TODAY. Fine. There goes the Apple Festival...

Checked into ER. Was taken back to a room within 10 minutes. Dr. saw us within another 10 minutes, and we were out of there about an hour later. I was actually pretty impressed with how quickly we were in and out.

So, Ethan has a corneal abrasion. How he got it? I have no idea. But, it was a good thing that I took him in because he would have continued to rub his eye and make it worse, making him more prone for infection. We were given a prescription for some eye ointment and sent along our merry way.

Ethan is resting now. Maybe if he wakes up better, we can still take him to the fair for a little bit. :-)

MRI

Ethan did really well today. He was given some oral versed to put him to sleep before having the IV put in. The taste was awful and he did not appreciate having to take it, but he was asleep within 10 minutes. I was told that the scan would take close to 2 hours, an hour and a half if he was really still.

Ok, so 2 1/2 hours later, the nurse comes out to say that they just finished the spine scans and that they were starting the brain scan. The brain scan should take an additional hour. And, that's what it was- a little over an hour.

Ethan woke up drunk and cranky. Tonight, he was still drunk and cranky. They say that he could even still be groggy tomorrow. He was given more versed and parabarbitol (?, I think) while the scan ran and his last dose was around 1pm.

It's 10:30pm now and Ethan is still awake. He is fussy though. I will likely have him sleep with me tonight since he is so fussy. (He just wants his Momma- makes me feel good!)

We should have results by next week. I have mixed emotions about what I want the outcome to be. Do I want something to be wrong with Ethan? Of course not. Do I want answers? Of course I do, and that just may come with an extra diagnosis. I will post as soon as I have results.

Gearing up for Africa!

In less than 3 weeks, I will be heading to Kitale, Kenya, Africa! It still seems so unreal, but I am getting quite excited- ok, nervous too.

I got my shots yesterday and my passport arrived today! All systems GO!

I am still raising funds for the trip, so if you feel a pull on your heart to support the mission, I recommend that you go to the Challenge Farm website to learn all about it and the work we will be helping out with! The more money we raise, the more money we can give back to the farm. I have a Chip In box on the right of my blog if you would like to support via Paypal, or you can send a check/money order that is tax-deductible to:

River Oaks Community Church (ROCC)
1855 Lewisville Clemmons Road
Clemmons, NC 27012

Please be sure to write my name, Kristen Faulkner- Kenya, in the memo line so my account is credited properly.

Thank you so much for your faithful prayers and support!!!

Giggles

If you are ever having a bad day, keep this post bookmarked. This is a collection of Ethan smiles & giggles. I can be having the worst day ever and then this sweet, precious son of mine will flash that smile of his at me and even better yet, will burst out in an infectious giggle and then all of my bad day has miraculously disappeared.

MRI Tomorrow

Please say a prayer for Ethan tomorrow morning. His MRI is at 11am. The FABULOUS news is that I was able to get in touch with his developmental/behavioral pediatrician to get an additional order to the scan for his brain. The original order was from the orthopedist for his spine. So, instead of seeing Dr. K and him wanting an MRI of his brain later, we are taking care of it now so Ethan does not have to be sedated more than necessary. Thank you.

Happy *belated* Birthday, Eryleigh!

Sweet baby girl. I am such a BAD auntie! I am SO sorry that I did not post this yesterday for your birthday! I was SO tired! Your cousin, Ethan, has been running me ragged! I hope that you can forgive me. I love you and hope that you had a WONDERFUL 3rd birthday! I wish that I could have been there with you to celebrate with your Chinese food! (Aunt Kamrin told me that you love the spring rolls!) :)

ST/PT/OT/GI Oh My!

I don't know why my son can't sleep past 5 am! For the past few days, he has woken up around 4:30 or 5 am. He will NOT go back to sleep. He will bang on his gate in an effort for the rest of us to get up with him. This is so not cool and I will be going out to get this boy some melatonin shortly.

Today was not a good day for him to be exhausted because he had an exhausting day ahead of him! First was Vitalstim @ 8am, PT @ 10am, OT @ 11am, and GI @ 1pm.

He was so tired and out of it for Vitalstim. The only good part about that is that he did not fight me and Ms. Shawna too much.

PT: Ethan pushed his wheelchair over 900 feet again, up and down halls. Then, Ms. Cindy (PT) put more weight in his chair. He could push it, but had a harder time steering and tuckered out about half way- so maybe only 450 feet weighted down. I was pleasantly surprised at him walking at all since he was so tired already.

OT: This is our second week with the weighted vest and it seems to be helping. The brushing is going pretty well and Ethan even wore his glasses for over 10 minutes without a full struggle to remove them! That is HUGE! Ms. Sue and Ethan read a couple of books, sorted shapes and colors, played with squishy toys, and bounced on a bouncy ball. Again, great session with OT that thoroughly surprised me because of his tiredness.

GI: I want to scream. I don't know what to do! So now, after a GI pow wow, they have come to the semi-conclusion that Ethan should get a G-tube. They have not been able to meet up with the surgeons yet, so they have not been able to ask the question of whether the pyloroplasty can be done without a nissen. I was highly confused. The last visit, we talked about a j-tube (directly into the intestines) vs. a g-tube because Ethan's issues aren't that he won't eat by mouth, it's that his stomach is so slow to empty. Unless he has the pyloroplasty, his stomach will still be emptying at a much slower rate (we are trying erythmycin, but it is not a long-term option). So, why would we put in a g-tube directly to the stomach when I can get the food in him by mouth???

So, apparently because of Ethan's weak esophagus, it is taking even longer to get food into his stomach. He could be losing some calories along the way. It is possible that this issue is contributing to Ethan not growing. Basically, the g-tube wouldn't take place of oral feedings, it would simply be for night time supplement. I really want to talk with the surgeon before we go this route. I don't want to put in a g-tube if it's really not necessary.

I have to keep a 3-day journal of everything Ethan eats and then fax it in so the dietician can go over it to see how his diet is. All this GI stuff is stressing me out!

Ethan konked out on the way home, of course! He is still napping. I think I will join him- it's been a day for me too! Plus, it's raining and that always equals good nap time! LOL!

Tina Fey back on SNL!

Oh my goodness, so funny!

Kim on TV!

My sister, Kim (or Kimberly as she is known in the literary world), was interviewed by a local news station for her work with Harlequin.

Check her out HERE, starting at minute 3:16

She looks so beautiful. That's MY sister, ladies and gents. Consider this little sister proud. :-)

Stuff

Ethan started Vitalstim up again on Monday. The first session went pretty well- Tuesday through Thursday's sessions were awful. Hopefully, next week will be better! He has another 4 weeks of this, so he better get used to it!

PT & OT are going well. Ethan is getting much better walking with only one-handed assistance. He's a tad wobbly, but once he gets going, he is very proud of himself! And, he should be!

Just a few minutes ago, he was standing and not holding on to a thing. Of course, I was trying to be sly by sneaking a picture in, but he is extremely smart and dropped before I could snap the shot. Lil' stinker! I am going to try again though.

So, we have come to the full realization that Ethan has some major sensory issues going on. He hasn't been fully diagnosed with any sensory disorder yet, but I know it's coming. That appt. is on the 23rd. So, we are doing the brushing that I mentioned in a prior post and we are looking into the sensory diet. Fun times.

I leave for Africa in less than 4 weeks now! WOW! It is amazing to see how everything is falling into place for this trip. Originally, I thought that the itinerary would take me to Amsterdam, but now we will go through Zurich on the way there and London on the way back. LONDON BABY, YEAH! (That was my F.R.I.E.N.D.S reference for the day- LOL!)

And, on a political note. Everyone needs to leave Sarah Palin's kids alone! Just because Bristol is pregnant, does not mean that the Palin's were neglectful parents. Kids will do what they are going to do- just ask my mother. My mother got pregnant with Kim when she was 17 years old and she had the strictest of parents.

And for those criticizing SP's choice for prenatal testing...prenatal testing is not only done so that parents can abort their fetus if there is a 'problem'. Some parents prefer to be prepared if there is anything abnormal. It was a blessing for me to not know prenatally that Ethan would have Down syndrome because it was my first baby and I would have stressed myself out too much, but if I were to have another baby, I think that I would test simply because I am more aware of things now, a little more mature, and I would want to prepare for anything. Being told that your newborn baby possibly has Down syndrome, a heart defect, and isn't breathing well right after birth and is being transported to the NICU at the children's hospital an hour away is no picnic and it threw us into some very raw emotions very fast.

So anyway- leave her kids alone.

Happy Birthday, Kolt!

Today is my brother's 26th birthday. This picture was from Kamrin's graduation in 2004. We wish him a very HAPPY BIRTHDAY! Kolt and I rarely agree on anything, but he is my brother who I will always love with all of my heart. I love you Kolt, I hope you know that.

RNC - Gov. Palin's Speech

She spoke to me directly. When she said that us parents of those with children who have special needs would have a voice and an advocate, she was speaking to me. Keep talking Sarah! We are listening!

"And children with special needs inspire a very, very special love. To the families of special needs children all across this country, I have a message for you. For years you have sought to make America a more welcoming place for your sons and daughters and I pledge to you that if we're elected, you will have a friend and advocate in the White House." ~ Gov. Sarah Palin

I was very impressed with her speech. I think that very little of it was written by a speech writer. I can't wait to hear her during the debate! Seriously, a part of hell is freezing over!!! (anyone who knows me knows that I usually count down until elections are OVER! They drive me batty, but this election is so important- so vital. I am listening!!!)

And, on a side note...does she not have perfect hair??? And her teeth appear to be perfect too! LOL!

The Power of the Broom

This is what motivates Ethan. A broom.

Today, after school, Ms. Mary had the broom to encourage Ethan to walk down the hall. Then, when it was time to go home, the broom was put back into the classroom. Ethan plopped to the floor and cried. We decided to go ahead and bring the broom out again. While giggling from the floor to his feet, HE'S UP and pushing his wheelchair down the hall.

When it came time to be put in his carseat, he was very upset that Ms. Mary did not put the broom in the car with him! I took a picture of him from my phone, but it is taking forever to arrive in my inbox- um, hello! It's been over 4 hours now since I sent it! I will post that as soon as I can.

Ok, finally! A day later...geesh! Here you go.

Ortho today

Ethan had his orthopedist appointment today. We checked in and were sent to x-ray. A few neck/spine shots were taken. We go to the waiting room. Dr. wants two more films (AAI). We go back to x-ray. Take AAI films. Go back to waiting room. We are called back to the room. Very nice nurse asks the same ol' questions. Doctor enters.

Doctor: "I'm confused. Why are you here?"

Me: "Because he is 7 years old and not walking yet?"

Doctor: "Why is that?"

Me: "You tell me!"

Doctor: "Oh."

After the doctor looked over my son's ever present hairy back, he agreed that the possibility of tethered cord or spina bifida occulta was there and that Ethan definitely needed an MRI. (THANK YOU JESUS! Finally! Someone ordered the MRI!)

We also wanted to check Ethan's hip stability, so yes, we were sent back to x-ray. We saw three different techs and for the last time, NO- there is zero possibility of me being pregnant.

Hips are great. Everything else was great. No worries about AAI at all. Game on for more rumble, tumble time!

MRI is set for Sept. 19th. And, if nothing shows up on that, then Ethan is just bound and determined to make me carry him forever! Of course, if something does show up- ugh, that's a whole different story.

Kid for Sale

Ok, not really, but he came close today! And, anyone who really knows me, knows that is a joke.

Today's events unfolded like this:

While getting ready to take Ethan to his 10am PT appointment, my alarm on my phone goes off. Hmmmm, what am I forgetting? Oh, it must be the reminder for his orthopedist appointment tomorrow. So, I check to make sure that's what it was and it was actually my reminder for the ENT appointment that was at 9:10am this morning! Well snap! We made that appointment back in July! Shoot, shoot, shoot! Ok, so I call the ENT, tell them we will be a few minutes late and they kindly tell me that it's not a problem.

We go to leave and Ethan is pushing off and won't be still for me to put him in his carseat. He does the pelvis lift in order to arch out of his chair and make things more difficult. He is also grabbing and trying to pinch me.

Prior to ENT coming into the exam room, I gave Ethan his milk that I had just mixed up. He took a couple of drinks and then thew the cup on the floor. Of course the lid came off and of course, milk - thickened, sticky milk- spilled all over. Now, I have an already screaming child over, you guessed it, spilled milk. ugh. ($100 bucks anyone??? He is really cute!)

ENT says that Ethan's ears and tubes look great. I discuss getting another sleep study and he agrees. He asked me if we would have to sedate and I said that I would rather not since I know that it would not be a true result. So, we are gonna swing this without sedation, but with a little melatonin help. He said that was a perfect choice since it is natural.

Leave ENT. Same mess as prior to ENT. Pushing, squirming, pelvis lift, pinching...

Arrive at PT a half hour late (let them know ahead of time, so all is well). Ethan refuses to stand. Floppy boy. Growling boy. He is ticked off at the world today and he is letting everyone know it!

OT is immediately after PT. We have started a brushing technique and joint compressions to help with Ethan's sensory issues. It does seem to help calm him down a bit. We did this after he was so worked up over having to put balls into the hole, stack blocks, and read a book. After he was calm, his OT worked on some dressing skills. He then did some shape sorting. You know, he really is good at sorting shapes- he just doesn't like to. Ethan tried to hit and pinch his OT as well. (Ok, we're down to $50 now!)

We left therapy and picked up Theresa for lunch. Ethan LOVES pancakes, so we went to the Dessertery which is across from Theresa's work. They have really yummy food, and best of all for Ethan- good pancakes. Well, he yelled, he pushed, he pinched. Finally, he got me good under my arm- you know that really sensitive part? Yep, he got me there. This time, I pinched back. Sorry if that offends some of you, but you know what? He stopped pinching me after that.

Time to leave. More pushing off, more pelvis lift, more unhappiness...

After taking Theresa back to work, I immediately drive home where Ethan will be placed in his room without any blankets or pillows (he chews on them when he does not want to sleep). Ni-night. Awwww, praying he wakes up the lovey, happy, cuddly boy that I know that he is...

Nope.

On to speech. He actually did pretty good in speech today. We heard some great crunches when trying to get him to bite down on some crackers. This was our last session because we start Vitalstim again on Monday- four days a week for five weeks. He will finish two days after I leave for Africa.

When leaving speech, once again, he refuses to walk. Floppy legs. What the heck? So, I try to get him to go down the stairs. He normally loves going down stairs- he thinks stairs are funny....not today! (By now, he's free...)

So, after my day with Senor Crankbutt, I am ready for a Toasted Almond. And, of course now that we're home and he can play with Daddy, all is well.

Tomorrow, we have the ortho consult. We'll see if he has any magical theories as to why Ethan isn't walking independently yet.

And, let me reiterate that I love this boy with my entire heart and soul. I am just expressing my frustrations from lack of communication skills in Ethan as well as other things. I truly believe the reason for his behaviors lately is from his own frustration from not being able to communicate efficiently. We're working on it though.

Labor Day

So, I saw this idea on Renee's blog today. Of course I'm a day late. So, just pretend it's yesterday for me, k? In honor of Labor Day, let's talk about, well- labor.

How long were your labors?
Long enough to make most women jealous. Got to the hospital at 10pm, had him at 1:21am. Went from 6cm to 10 cm in 20 minutes and pushed him out 20 minutes after that. Doctor said that if I ever have another baby that I have to go to the hospital with the first contraction!

How did you know you were in labor?
Contractions every 5 minutes or closer. Lost the "plug" earlier that day, so I figured it was time. Water broke at the hospital.

Where did you deliver?
Mercy Hospital, Merced, California

Drugs?
Not a one. Thank you very much. *ROAR*

C-section?
Nope.

Who delivered?
Dr. Samuel Loredo
Claire Alvarez, RN

Who was present?
Scott, my sister Kamrin, and my Mom (though over in the back of the room because she snuck her way back in after the staff said only TWO were allowed. It was fine though)

My mother-in-law was in the lobby- she heard me scream during the last push. My dad was in his truck- outside in the parking lot with the windows up and the radio on. He heard that scream too! It was only one. One scream. Then, he was out.

Fun at the waterpark

The Make A Wish Foundation is very good to its Wish Families. We have had a family day at Carowinds amusement park and yesterday, we had another family day at Wet 'n Wild waterpark in Greensboro. We had never been and I wondered if there would be enough for Ethan to enjoy. No worries, Ethan had a great day!!! Doesn't he look so cute in his little wet suit and life vest?

Ok, after posting the pictures, I decided to do a montage instead. I don't like how photobucket does things even after having a private profile. So, sorry. The montage is really cute though!

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I think that I may even consider getting a season's pass for next year since I know that they have plenty for Ethan to do! Shoot, he would have been happy just waiting for the wave every four minutes!

On a side note, I observed something awesome while there. There were families from I think every ethnicity there and everyone was enjoying there time as a family. There were no racial barriers. It was so awesome to see. Just something I saw and made a mental note of it.

Now, if I could have only gotten the one woman wearing the bikini bottoms that barely covered her crack to realize it was a family place and we didn't need to be seeing her butt cheeks...ah, you win some, you lose some. LOL~

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.

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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.