More fires in Mariposa

I saw a news clip on CNN or something like that saying that there was a fire near Yosemite. Now, that is a pretty large scale of where exactly the fire could be, but sure enough, it's in Mariposa again. This time, it's not near my parent's house, but my grandparents house. The fire has 0% containment and over 16000 (that's a jump from the original 1000 that I read) acres burned. Lots of people have been evacuated already. Please keep everyone around the fires in your prayers, including the firefighters who brave the flames.

http://cbs13.com/local/mariposa.county.fire.2.780798.html

Dr. Randy Pausch

Passed away today. An amazing and inspirational man. His "Last Lecture" is well worth the watch.

My lil' nudist

This morning, I woke up to the most beautiful sound of giggles. I come around the corner to Ethan's room, and I find him standing at his gate all proud of himself and his nakedness! He has always loved not having clothes on, but this is a first! Actually taking off the diaper...oh my goodness!

If I had never...

If I had never worked for Bank of America, I would have never applied at Patelco.
If I had never worked for Patelco, I would have never met Theresa.
If I had never met Theresa, I would not have known of TSCS in NC.
If I had never known of TSCS in NC, I would never have moved.
If I had never moved, I would have never attended the NDSC conference in Atlanta.
If I had never attended the NDSC conference in Atlanta, I would have never found out about Downsyn.
If I had never found out about Downsyn, I would not have the support of so many across the country!
If I had never found out about Downsyn, I would not have some of my best friends for life.


If I had never had Ethan, I would not have moved.
If I had never moved, I would not be blessed with how God has utilized me with others.
If I had never moved, I would have never met Karen and Olivia. I feel a part of my heart would have always been empty if I had never been able to love Miss O.

If I had never had Ethan, my heart may not be as full of compassion as it is.
If I had never had Ethan, I may not have become the advocate that I am.
If I had never had Ethan, I may not have ever known what a hero really is.

Someone very close to me once told me that I had depressing friends. On the contrary. I have awesome, amazing, strong friends. They are Mothers who never back down from a fight. They are Mothers who do not see the disability in their child, but their ABILITY and CAPABILITY. I am honored to have the friends I do. I hope that I am as good a friend to them as they are to me.

Therapy & Tests to come

Today was Ethan's last round of VitalStim therapy...we hope. He will have a modified swallow study on Friday to see if it worked.

Ethan's private PT has been going well and he will start private OT next week. He is going to HATE me by the end of this summer!!!

E also had a GI appointment yesterday and he will take part in an overnight study to measure the correlation between weakened swallow function and reflux. I do not feel that Ethan's reflux is under control right now and he's on max meds. The study consists of an endoscopy, PH probe, stomach emptying, and another test that measures the strength of the swallow down the esophagus. Fun times. I don't know when this study will be quite yet, but hopefully soon.

Ethan also needs another sleep study and a full neurological/orthopedist workup. This comes from advise given from two of the most well-renowned physician's who work with persons with Ds. Fun times.

Sayreville, NJ

I just noticed that someone in Sayreville, New Jersey is visiting my blog. Jon Bon Jovi is from Sayreville. Hmmmm...ok, Jon. I am here, waiting for your call. ;-)

Back from Boston

Ok, well I have been home from Boston since Sunday night, but I just haven't had the time or energy to post! My friend, Lisa, and I left on Thursday afternoon for Raleigh. We would have about an hour to deplane, get to the hotel, and move on to the Garden for Bon Jovi. Well, we had an amazing trip up and ended up landing 20 minutes early!!! I had the flight attendant thank the pilot for me- I did have a date with JBJ after all!

The concert was fabulous! Bon Jovi really can't do any wrong- except when JBJ goes out into a section of the audience and lets others fondle him all while having total disregard for how that makes me feel! LOL!



The return back to the hotel was a bit of an adventure. Let's just say that jails should not have full length windows so men can do things where you can see and that $11 cab fare is not that bad! We tried to save money, saw things that we shouldn't have, experienced the subway system, and got back to the hotel an hour and half after we left the Garden. Fun times. HAHA.

Boston is absolutely beautiful! I loved it! It is a very clean city with friendly people. The history there is awesome too. I was able to go out on a Charles River boat tour with some of my friends from Downsyn and saw Harvard, Boston University, and MIT. The harbor is pretty too. I met my step-grandmother and step-aunt while there too. They live about 20 minutes outside of the city and came in to take me to dinner. It was a such a treat for me to be able to spend that time with them and finally meet my dad's sister, Robin. I may have asked too many questions, but it was my one chance to find out more about my dad since he never shares, nor seems to care to want to. I wish that I had just one more day to actually do some sightseeing, but I was there for the NDSC conference.

I came away with some great information and even greater friends! I "talk" to some of these friends all the time online and then to be able to actually meet them and have a great time was just the added bonus!


Bye-bye Boston! I hope to see you again soon! LOL! I miss all my Downsyn friends already! Why does the US have to be so large??? :-(

The view from my hotel room:





I could not stop taking pictures from the air! It was all so beautiful!

Things to ponder

Yesterday, I stopped by Olivia's pediatrician's office to say hello. Weird? Not so much when we were in a very close position a few months back. If she were accepting new patients, I would likely switch Ethan over! She is amazing. Anywho, when I got to the office, I told the receptionist that I would like to say hello to Dr. Heinrich. She asked me who I was and I just said, "Just tell her that Nurse One is here". She said, oookkkk. Like, whatever. Well, within a minute, Dr. H was out in the lobby giving me and Ethan a big hug. We visited for a few minutes and she then again asked me if I was going to nursing school. Dr. H was a driving force behind me thinking about applying the last time. She offered me recommendations and everything. Now, she thinks that I should just go to PA school! WHAT!?!? WOW! I am not sure about that one, but you never know. But, she did say that she would help me with answers for tests. That would be awesome! We'll see...pondering.

After we left Dr. H's office, we went to Sam's Club. Karen called me and said, "Where ya goin'?". She was behind me! Too funny. She has been very sick this week and had to go get her allergy shot. I told her to go home and go back to bed- I would check on her later.

Ethan and I met my friend for lunch. Her mother, sister, son, and niece also joined at the every so scrumptious Olive Garden. As we were close to wrapping up lunch, I look across the dining area to see a woman leaning over in her chair with her head resting on her knees. She was alone. Something was wrong and no one was helping her. I asked my friend to watch Ethan for me and I went over to help the woman. She was feeling faint and was sweaty/clammy all over. She had just had some blood drawn and was told by the doctor that she was dehydrated. So, I think that she was anemic, dehydrated, or had low blood sugar (she hadn't eaten yet)- or a combo of the three. The manager got me some orange juice to give her and a cold towel to put around her neck. She was on her knees on the floor by this time with her head down still, so I was lifting her chin enough to get the oj in her. I also continued to fan her with a folder that she had. She ended up being fine after a little TLC. Numerous people came up to me and asked me if I was her nurse (LOL)- um, no. Just someone enjoying some soup, salad and breadsticks!

My bill came and I paid with cash. The manager came back up to me and said that he would like to take care of my lunch to thank me for being a good samaritan. Aw. I about cried. There are still rewards for good deeds- even though that is not why we should do good deeds.

Belated Birthdays!

Happy belated birthday to my friend, Darlene!!! We are exactly 6 months apart- her birthday was July 2nd and mine is January 2nd. So, really- happy belated HALF birthday to ME! LOL! I tried to call the girl, but she is too busy for me anymore...sad, sad. J/K...She recently opened her own boutique in Atwater and it is going very well. I love you Dar Dar.

Happy belated birthday to my little cousin who I have always called my neice, Mallory Jordan!!! Hi honey. I am sorry that I didn't get to call you the other day. We have been VERY busy. We love you and hope that you had a wonderful birthday!!! *muah*

Happy belated birthday to my Aunt Bitsy yesterday!!! I also believe that my cousin's little girl, Keira, celebrated her birthday yesterday too! Birthdays, birthdays everywhere!!!

I know my Aunt Shell was at the end of June too! Uncle Cobb is at the end of July. Happy birthday to all. WE LOVE YOU!!! *****CORRECTION: Aunt Shell's b-day is the end of July and Uncle Cobb's is the end of August. They are the same age for one month. I just had them a month off---my bad!*****

Upcoming: Yvonne, July 6 HAPPY BIRTHDAY!!!
Jen, July 7 HAPPY BIRTHDAY!!! (I am hoping that she can come to Boston next week to see me!!! Hoping, hoping, hoping!)

Ok, now I am probably forgetting someone ultra-important. SORRY if I am!!! *muah*

Happy 4th of July!

Have a great 4th of July!!! We are going over to Theresa's later to bbq and then we are off to the Lewisville fireworks show.

The Oliver Fire

There is a major fire right by my parents house in Ponderosa Basin (Mariposa). They have been on pre-evac orders since Monday and 15 minute warning since Wednesday. I talked with Kamrin the other morning as I woke her up and she said that it was just really smoky- she even dreamt of smelling smoke! This is not just over the mountain for my parents- it is in the back yard, so to speak. Please pray for my parents home as well as their neighbors and the firefighters that are working so hard to contain the fire. I think that the firefighters pretty much have it under control now. I haven't heard anything new from my mom and the news hasn't updated since Tuesday.

As I searched the internet and Fresno news the other day, I found a video.

Who are the first people that I see??? Yep, that would be my parents! Mommy never passes up a good opportunity for interview!!! LOL!

Click here to see (Click on the "Watch the Video" link within the article)

Ok, for whatever reason, the link won't work... here it is: http://www. ksee24. com/news/local/20705934. html

NYC

I know it's been a while. I haven't felt like writing. I went to NYC last week to help out my friend. Her son had phase I out of III brain surgery. I was not there to see the city, I was there for my friend. But, I was able to see some of the city- ok all technically, from the top of the Empire State Building. I probably could have stayed up there all day. I love things like that! I could spend hours up at the Space Needle too, even though I have been up there numerous times.

I was able to meet up with a couple of Downsyn friends. Sara brought her two girls to the ESB and we were able to visit there. I met up with Maureen in the city on Friday and we walked to dinner at California Pizza. Yes, this California girl had never had California Pizza before- I had to go to New York for it! Boy, was it yummy though!!! After a bottle of wine and LOTS of good food, we came back outside to rain. So, we walked back to Maureen's office and grabbed some umbrellas only to find the rain had stopped by the time we left the building. Go figure.

Maureen and I talked for a long time, even after we reached the hospital/apartment entrance again. I felt so bad that she left me after 2 am to walk by herself back up to Penn Station. It's a good 25 minute walk in the middle of the night alone. Really though, I never felt like I wasn't safe. I don't know if things have changed post 9/11, but I found the city to be clean and (mostly) friendly. It's a bit faster paced than what I am used to, but I could certainly get used to it. This mountain girl is adaptable! LOL!

Saturday, Maureen had invited me out to her home on Long Island. She also offered to take me to the airport. That saved me quite a bit of money on cab fare Sunday. I hated to leave my friend and her family, especially because of the circumstances. But, everyone would be so proud of me! I hailed a taxi like a pro! I got on the LIRR (Long Island Rail Road) all by myself! I fought with a deli man and held my own. (NO SOUP FOR YOU!!!) I found that the movie scenes with a whole bunch of mom's at a city park talking about if there infant is on the waiting list for such and such preschool is TRUE! No lie. I took the kids out one day and found a nice park for the kids to play at. No dads. Only moms and nannies.

I did get a few pictures, but my camera's sensor is going out and there are a bunch of lines going through them. That ticks me off, but I really can't afford to get a new one. I am really going to have to figure something out before Boston in a couple of weeks though!!!

Before I end this, I have to share the coolest part of my NYC trip. After "F" was out of surgery and moved to the PICU, I went in to visit. The PICU at NYU is four beds to a room. I looked around for a minute and I see two stickers on his cabinet door...Cinderella and Belle- Olivia's favorite Disney princesses! OLIVIA WAS WITH US IN P3!!! Coincidence? I think not.

Grammar Grrrr's

Ok, I do not proclaim to be an English guru or anything, but there are a few things that just make me cringe. I may add to this over time, but here it goes...

YOU'RE = YOU ARE (You're driving me crazy!)
YOUR = YOUR (Your shirt is blue.)

LOOSE = LOOSE, like GOOSE (I am wearing LOOSE clothing.)
LOSE = LOSE, like OOZE (We are not going to LOSE the game today.)

When people title pictures as xxxx and I. I guess this rule depends on what school you went to because my teachers always taught me that "I" is only used when it can be used alone. You don't say "this is I", you say, "this is me". So, I naturally think that those pictures should say Me and Ethan or Ethan and Me because either one is fine alone. I had submitted a picture of Ethan and me to a lady putting together an online photo album for Mother's Day last year. I had titled it "Ethan and Me at the Buddy Walk". When I saw the picture, the label had changed to "Ethan and I". (eeeeekkk) I wrote the lady and kindly asked her to change it back, she refused and instead sent me links to why her way was proper and then proceeded to remove the picture from her album altogether. Quite rude actually. Anyway, this one is still debatable I suppose. Amazing what you remember from school 20 years ago.

Vent over...for now.

Emotions

Ethan had VitalStim Therapy today. He had a different therapist today and he didn't like that very much. Because our SLP is on vacation, we were squeezed into another slot with another SLP. She is very nice. She is firm with Ethan- which he totally hated. Anyway, because we were squeezed in, the therapist actually had two other children to do therapy with while we were. They were sweet children. One was a little girl with chunkamunk legs and chubby cheeks. The other was the most adorable little boy who blew me kisses from the moment he came into the room. Both of them had trachs. Olivia had a trach.

Now, I have seen other children with trach's since Olivia's passing. I don't know what was different about today. The little girl got so upset over something and she had to be suctioned. I had to bow my head down to the side as the tears started flowing down my face and yet I didn't want anyone to see. Hearing the sound, seeing the catheter- part of me wanted to help. It was a huge honor to me when Karen taught me how to suction Olivia's trach. That is not something that she just taught anyone to do. And, I hate necks. It was an adjustment initially to see Livvie with the trach, but because it helped her, I learned to not let it bother me. I would do anything for Olivia. I just can't tell you how much I love that little girl.

Please continue to pray for Karen. Occurances like this happen all the time for Karen. There are reminders everywhere that Olivia is not here physically anymore. Even though my heart is broken along with so many others who had the privilege of knowing and loving Princess O, it will never compare to the broken heart of Karen and Weldon.

Just for fun...

Another thefted idea from Christina over at Kwisteena's Kraziness. I can't come up with these things on my own.

Answer the following questions:

What is your first name? Kristen

What is your favorite food? pasta

Where did you go to high school? Mariposa County High School

What is your celebrity crush? Johnny Depp

What is your favorite drink? Iced tea

What is your dream vacation? Fiji

What is your favorite dessert? Cheesecake

What do you want to do when you grow up? Mommy

What do you love most in life? Life

One word to describe you. Nurturing

What is your favorite flower? Tulip

What is your favorite fast food place? In-n-Out

Now, go to Flickr and put your answers in the search engine. Choose one picture from the first page, copy the URL and then put it in the mosaic maker here. Here is my mosaic creation:

My Family

I saw this on Renee and Christina's blogs. I am a copycat. LOL!

Create your own family sticker graphic at pYzam.com

Bad Mommy!

On Friday and Saturday night, I had the pleasure of caring for a beautiful little 5-month old little girl with Down syndrome named Elizabeth. Her parents got in touch with our local Ds support group asking for a babysitter while they were in a wedding. I, of course, responded. :-) You know I never back down from a chance to snuggle with babies if I have the chance!!!

Well, I had to take Ethan with me on Friday night because Scott was networking at the downtown gallery hop. Ethan did not nap Friday (big mistake) and he was Mr. Crabbutt once we got to the family's hotel room. Elizabeth was tired from her day of meeting loved ones and off nap schedule so we snuggled on the chair/ottoman combo when she fell asleep. Ethan did NOT like Mommy snuggling Elizabeth! I told him that Mommy could hold him too, so he climbed up with us and immediately tried to take Elizabeth down! Seriously, Ethan went psycho-baby on me. He tried to grab her, pinch her, pull her off of me...It made him even more mad that Mommy was not letting any of that happen! And, Mommy put him back on the floor after that behavior. Bad Mommy!

Ethan gave me attitude all day Saturday as well. Boy, does that kid hold a grudge! I would have to say that he gets that from Gramma. (Yes, Mommy- I just called you out! LOL!) Today, he was a little better with me, but not by much. He was much happier with Scott today. Scott does not snuggle with other babies, whereas Mommy goes to hotels to watch little princesses and takes care of the babies in the nursery at church. Bad Mommy!

Thanks to Evelyn & Christian for trusting me to care for Elizabeth- what a joy!!! It was my pleasure. Let me know if you are ever back in this area and I will be sure to look you up if I am in yours!!!

Much love to all!

Brags & Ramblings

Yesterday's Vitalstim session went really well! Ethan even tolerated some oral motor exercises! Today, he was just feisty. He tried to rip off the tape and stickers numerous times, so we had to put on the arm restraints. :-( I hate that. Our sessions are done for the week and hopefully next week just gets better!

Surprisingly, Ethan took 8-10 unassisted steps on Monday too!!! Yes, that's what I said. He was so happy doing it too. If I wasn't the one he is walking to, I would be taking some video. I will work on that. I am so proud of him! He has come so far this year.

I am feeling better but still icky if that makes any sense at all. I coughed so much the other day while visiting with Karen that she insisted on giving me an albuterol breathing treatment and sending it home with me. I will be using it again soon.

Karen and I went up to Olivia's gravesite on Monday. Karen had new flowers to place. It really is still so unreal that Olivia is gone. I look around Karen's house and just keep waiting for Olivia to come home. Even being at her gravesite, looking at her headstone and footstone, I am in denial that she is there. We buried her there. No, that was a bad dream. We really didn't bury this beautiful 8 year old princess, did we? See- denial. I told Karen that these emotions that I have are not ones that I can usually express to anyone. She asked me why not. The truth is that Olivia's passing took a major toll on me. I loved her instantly and I cared for her as if she were my own. Of course, my grief will never compare to Karen's, but it is still something that takes over me some days. People don't understand how I can have such a connection to a child that wasn't my own. I should be "over it" by now. Well, I am not over it and I don't know if I ever will be. I know that she is in a better place and I know that I will see her again, but the fact that she is gone is still so heartbreaking.

Vitalstim Therapy

Today was Ethan's first session. He hated it. I started to cry with him at first because it was so awful. He scratched his neck so fast as soon as it was turned on so he could tear the probes and tape off, but he eventually was just plain ol' mad. He went for a full 45 minutes today without any oral motor exercises. Tomorrow, we go longer WITH oral motor exercises. Wish us luck! Only 19 more sessions to go!!!

MTV Movie Awards

Ok, anyone who really knows me knows that I love Johnny Depp in Pirates of the Caribbean. I had always liked him and thought he was good looking, but since Pirates, he is now at the top of "my list". He came onstage of the MTV Movie Awards tonight and I think I panted like a teenage girl. I would like to thank God for creating such a beautiful man. Darn, he looks good! He was back to his 21 Jump Street look. Yummy.