Bone Marrow Registry

DO IT!

Last week, my friend McKenna was diagnosed with CML- Chronic Myelocytic Leukemia.  The bloody "L" word.  How I hate it.  I hate that McKenna has to experience this, has to fight this, has to fight it forever.  She is such a beautiful, warm-hearted, giving, loving, etc. woman- wife, mother, sister, daughter, friend...my heart was crushed to learn of her diagnosis and to feel seemingly helpless since she lives in Texas.  All I can do is pray and ask you to pray for her, her husband DJ, and her children as they all tackle this battle together. 

Actually, there is one other thing that I can ask of you.  You can register to be a bone marrow donor.  The process is simple and free.  Click here and register TODAY.

I can't remember if I have ever told this story here, but I will repeat it because I feel that it is highly relevant. 

When Ethan was undergoing leukemia treatment, both Scott and I joined the National Marrow Donor Program.  While Ethan's leukemia never required him to have a transplant, we saw children everyday that were waiting for a donor for their transplant.  We could not just sit back and watch these children wait and wait without trying to do our part.

A couple of years passed by when I got a phone call from the donor program asking me if I still wanted to be a donor.  I about jumped out of my seat with an excited, "YES!"  Turned out that I was a SIX FOR SIX match for a gentleman in South Carolina with lymphoma. 

I was actually off work that day, but had them fax me the paperwork to my office and I filled everything out the same day.  Even though the nurses that signed me up on the registry said that my rheumatoid arthritis would NOT prohibit me from being a donor, and even though there was no mention of it on my medical forms, I volunteered the information.  The processor had to get clearance for me from the medical director.  I waited for a call.  I anxiously waited for that call to say we were good to go.  But, that didn't happen...

"Unfortunately, Mrs. Faulkner, due to your rheumatoid arthritis you will not be able to ever donate bone marrow.  We are sorry."

I cried and cried and cried.  This man waited and waited for a match for his transplant and I was it.  Hope was on the horizon for him and then it was lost...all because of this stupid RA that has robbed me of so much.

I have no idea if that man was matched with someone else.  I have no idea if he was able to have his transplant.  I just know that I felt like I let that man down.  This is also another reason why I give blood and platelets so much. 

Peoples lives out there depend upon strangers who are willing to go through a simple process to save a life.  Please don't make the mistake of thinking you can wait until you are directly affected by leukemia/lymphoma before registering.  YOU could be the match that someone is waiting for!

 DO IT! 

NDSC Annual Convention Orlando

We were very lucky recipients of a scholarship from our local Down syndrome affiliate, Piedmont Down Syndrome Support Network, to attend the National Down Syndrome Congress Annual Convention.  The convention was held at Disney's Coronado Springs Resort and Convention Center at Disney World in Orlando, Florida. For us, the convention is more than just a chance to sit in informative sessions for a weekend, it is also a time to spend time with our extended family in the Down syndrome community.  We- ok, I, have met some of my closest friends because we share the common bond of having children with Down syndrome.  We are each other's support, even if our kids are facing different challenges.  Convention is a time to be together and really feel like you belong without any prejudices or preconceived ideas (unless you are sitting with friends at the pool bar chatting it up when the drunken addition starts beligerantly telling me how I shouldn't even be at the Ds convention- I should be at an Autism convention.  Yeah, not the highlight of the trip, but oh well...)

We took advantage of Disney's Magical Express.  We put a trusty little bag tag on our luggage and once we dropped it off at the airport, we didn't see it again until Disney delivered it directly to our room at the resort!  Just some advice for those traveling with children, if you didn't know it already- there is a family security line at the airport!  If there hadn't been that line, we would have missed our flight out of Charlotte since we hit a 45 minute delay on the way there.  The Air Tran employees weren't very helpful either!  They told me that I would likely miss my flight because the security line was SO long.  Did they mention that we may make it/save time with the family line?  Of course not.  That would have been too easy.

Welcome to Florida!  Hot, hot, humid Florida.  It's humid in North Carolina, but it is REALLY humid in Florida!  Oh.My.Word.

We arrived on Thursday and really just relaxed.  Registration opened up Thursday night and after I picked up our packets, I noticed Dr. Libby Kumin sitting on one of the benches in the convention center hall.  I made a point to go up to her and talk about Ethan's recent Loyola evaluation (which was at a clinic that Dr. Kumin founded!)  The therapist that evaluated Ethan was a student of Dr. Kumin's and she spoke very highly of our therapist, Maren.  I happened to have the evaluation in my bag and Dr. Kumin was happy to look it over.  This may have been a highlight of our weekend. 

Friday morning, we got up and left to go pick up our rental car for the day.  We planned on visiting Give Kids The World again- the resort where we stayed for Ethan's Make A Wish trip.  We took advantage of having the car and availability to go to Wal-Mart to pick up some food/snacks/water to keep in the hotel room so we could save at least a little bit of money.  We had to get back to the resort since the sharing sessions were to begin at 3:30. 

This was Scott's first convention.  I didn't think that he was going to go to any of the sessions, but he did and I am so happy about that.  First up, was the Complex Needs sharing session.  The sharing session is one of my favorite parts of the convention.  The sharing sessions consist of different options:  Mothers Only for different age ranges, Fathers Only for certain age ranges, Single Mothers, Grandparents, and Complex Needs.  (There are others, but I can't think of them all right now)  I can tell you that the first year I attended a conference where I noticed the sharing sessions was in Atlanta and I went to the Mothers group for 5 year olds, I think it was.  There was absolutely NOTHING that I had in common with those mom's.  So, when Kansas City had the Complex Needs session, I was SO excited.  There are many times that I feel isolated even from the Ds community and I am surrounded by other parents that feel the same way in the Complex Needs session.  We can share and learn our experiences and knowledge. 

After the sharing sessions were over, it was time to prepare for Opening Ceremonies!  The OC is always inspirational as we learn new developments and get to hear from some amazing self-advocates!  Ethan was so funny- he kept walking up and down the aisle laughing.  Another great thing about convention- kids can talk or walk down the aisle without upsetting anyone.  Ü

Saturday was going to be a FULL day.  The first session that Scott and I attended was given by Dr. George Capone.  Dr. Capone is very well-known in the Ds community.  He has done a lot of research on neurobehavioral disorders in people with Ds.  This could range from those on the Autism spectrum, to bipolarism, to ADHD, etc.  The bottom line for us was that there are so many characteristics of Ds that coincide with autism, so it is not always the easiest to give a concrete diagnosis of autism.  It just depends on the professional you are seeing to make that diagnosis.  Dr. Capone talked a lot about different medications and answered many parents questions and concerns in regards to those medications. 

My next session was about the legislation affecting those with Ds.  I was surprised that I wanted to attend this session because I HATE politics, but I am so glad that I went.  It was very bi-partisan, so I didn't have to listen to the left fight the right and vice versa.  I don't need to listen to that junk- I need to hear what is happening and how it affects MY child.  The speakers did a great job at doing that.  I was, particularly, interested in the ABLE Act.  What is the ABLE Act?  Basically, it is an account that money can be placed in that does not affect services provided to those with a disability.  So, Ethan was on Social Security Disability, BUT it governed how much money Scott and I could make, how many cars we could have, how much money we could have saved...the ABLE account would make that money exempt from being counted towards the limits put down from the government.  As kids with Ds grow into adulthood, they need the opportunity to have money saved just like you and me.  This is a great movement for our kids! 

While I was sitting through legislation fun, Scott took Ethan to the Post-Walking Skills session with Patricia Winders.  Scott reports that we should be working with Ethan more on balance boards and kicking a ball.  He says that the transition from carpet to hard wood can be especially noticeable to a person with Ds.  This may be why Ethan would always drop to the floor each time he made that transition.  (Side note that I learned from another session:  Numerous parents reported that the Sketchers Shape-Ups have helped tremendously for concentration and balance for their children!)

Once the first two sessions were complete, we browsed the exhibit hall and headed back to our room for lunch and to get Ethan down for a nap.  Good news:  Ethan napped.  Bad news:  I napped with him and slept through the wake-up call to go to the 3:30 session.  I was so upset because the 3:30 session was one that I really wanted to attend (Why Federal Legislation Preventing Restrain & Seclusion is Essential - and What Parents Need to Know).  BUT, my mother-in-law attended it and along with the compendium that the NDSC provides with the powerpoint slides (if available), I have some great information to get started in order to learn more.  The best resource on this subject is, by far from TASH.  Please go to www.tash.org/aprais for further information!  GOOD STUFF!!!

Saturday night ended with the dance.  We ♥ the dance.  It is the absolute best time to see all of the self-advocates together with their friends and families to dance and have the time of their lives!  Seriously- there is nothing like it!  Chris Burke along with Joe & John DeMasi DJ'd the dance again.  Chris has been one of the most famous faces of a person with Ds, so he is like the Ds celebrity.  But, I am over Chris Burke.  I think that he has done great things for our kids, but he is actually quite rude if you try to talk to him.  Cordial, but rude at the same time.  It is hard to explain, but I have spoken to many about it and more often than not, people feel the same way.  Anywho, we were able to meet up with some of our Downsyn friends during the dance!  It is always a great time to be together!

Sunday, Scott went to the D.A.D.S. session.  He was kind  of disappointed that the session mainly consisted of how to create a local affiliation of DADS.  I think that Scott would have enjoyed more about what the men get out of having a specific organization for the father's and how having the support of other dad's helps them.  Oh well, it's ok.

I went to a session with Michael Cardella and his mother, Barbara.  What a warrior Barbara was!  She did not accept it when people would tell her that Michael couldn't do THIS or THAT.  He was fully included, graduated from high school, and is just an inspiration!

Scott and I attended two different "last" sessions.  Me- "Parents and Schools as Partners", and Scott- "Managing the Medically Complex Child".  I was torn on which session to attend since I am really wrapped up in Ethan's education right now, but I "know" the speakers from the Medically Complex session.  I felt that Scott could remember more from the medical side since he gets that (to a certain extent, LOL), but he isn't really up on the school stuff so much. 

I really wish that my session was on Saturday.  It could have been a two-hour session, at least!  LOTS of great information.  Look out, Ethan's school district!  LOL!  I really don't understand how our district continues to get away with what they do. 

I would say that this year's convention was a HUGE success!  We saw friends, laughed, and cried.  We were educated and we were inspired.  Thank you, again, to PDSSN for giving us the amazing opportunity to be able to attend! 

Next year- SAN ANTONIO, TEXAS!!!!  Ü

She's a HOOT!

{I'm Shipping Up to Boston by Dropkick Murphy's}

Eryleigh rocking out to one of her favorite songs on Aunt Kamrin's iPod. 

(Just a sampling of the many expressions that Eryleigh makes..self-portraits, of course!)

Job(s)

So, on the day that I met with people in the special education department in Mariposa, Scott found out that he got a job in NC.  Our friend from small group had referred Scott to the general contractor that does all the work on his apartment buildings.  After some phone tag, Scott was finally able to meet up with him.  He was hired right then.  Finally, someone sees Scott's qualifications!  ☺ 

Scott started his new job the day after I got back from California.  There is a lot more travel involved with this company, but we are thankful for it!  Scott has already had an overnight in Columbia, SC.  I am going  to have to try and get used to overnights.  I don't sleep well when he is gone and I can't take anything because I have to be able to be alert for Ethan if need be. 

The other job is prospective for me.  I have an interview on Thursday.  I am not going to say much about it because I know there is a larger pool of candidates.  I will just ask you to join me in praying for the best. 

Grandparents

I am very fortunate to still have both sets of grandparents living.  My grandmother's have both been facing some health issues.  Mom (maternal gma) has Paget's Disease of Bone, and recently had a hip replacement.  She is in a lot of pain on a daily basis.  Grandma (paternal) has Alzheimer's.  This has been an emotional diagnosis for ME.  It has been extremely difficult to be across the country, call my grandmother, and have her speak like it is ten years ago.  A few years ago when I was home with Ethan, she looked right at him and asked who he was.  That was the first clue that something was going on with her brain.  It has been a fear of mine that one day she won't remember me.  I can accept if she doesn't remember Scott or Ethan, oddly enough. 

Kim told me a story about how she was talking to Grandma on the phone and how Grandma was recalling a "terrible accident".  She described our Dad's accident, but didn't realize it was her son that she was talking about.  That gave me the biggest lump in my throat. 

My mom took me up to see my Grandma and Poppy.  I am happy to report that she remembered me!  And, she looks GREAT.  Poppy is really taking care of her.  Poppy has always been a stubborn man, but it seems that what is going on with Grandma is softening his personality some.  Grandma gave me some info about some of their antiques and I just tried to soak it up.  I was able to spend a fair amount of  time with them, and I am thankful.


With Grandma


With  Poppy. 


Grandma out by her front door

Kamrin and I hung out at Mom & Dad's (grandparents) for a while and just relaxed.  This is something that I think all of us kids have done since we were little.  Well, Dad used to have us clean up the black walnuts from the yard- that wasn't very relaxing!  LOL.


With Dad


With Mom


With Mom & Dad.  I am still trying to figure out where we got our heighth from...

I feel so lucky to have been able to spend a snippet of time with both sets of Grandparents.  Love them!  ♥

A snippet of pics.

Twinsies.  LOL.


Pure sweetness, my niece Eryleigh


Eryleigh likes self-portraits. 


Auntie and her Honey Bunches


HOME!!!


Bald Rock, Ponderosa Basin, Mariposa, CA.  Directly above my parents house.


Having a sweet bonding moment with my nephew, Christopher.


My dad's sausage roll.  The BEST!  So yummy, OMG.


With my cousin Erin, her hubby Devin, and their new daughter Aynsleigh.  (Big Sister, Mallory was off doing something)


Layla & Eryleigh


With my nephew, Sebastian.  He will be SEVENTEEN in a little over a month!  YIKES!


And, my nephew Jaidyn.  He will be FIFTEEN next month.  He is 4-6 inches taller than me now.  Oh my!


With my Tina Boo.  We worked together at Patelco for many years and have had the privilege of having her as a friend!


With my niece, Samantha (who is now in Spain!).  She was so sweet and came and picked me up, took me to In-n-Out for the first Double-Double of the trip, and gave me my very own guest room at her home.  She  even obliged my request to ride the Tilt-a-Whirl at the fair.  Gotta love her! 


Speaking of In-n-Out...thar she is! 


OMG, yummmmmmmm. 


Eryleigh with her "pretty hair" (Coutesy of Auntie) after "tap tap"


I love this little girl.  She snuggled up with me in the morning just because.  :)


Likely the most precious picture taken during the entire trip...Auntie Kamrin and her Honey Bunches konked out on the couch. 

I, sadly, did not get any pics with my mom or dad.  I had planned on it, but plans changed  last minute due to an airline strike and I had to leave a few days sooner than I had  planned.  :(

Home again!

Two weeks ago, I took advantage of a wonderful offer from my bestie in Texas.  Her hubby is a pilot and offered a buddy pass for me to go home to California.  At first, I was going to take  Ethan, but it was out of our budget and the thought of flying standby with Ethan made me very nervous.  What if we got bumped?  Would I have enough thickener/pureed food for him?  Diapers?  Wipes?  Aaaaarrggggg!  It was just too much.  So, the idea was almost lost- until Kamrin said, "One of you is better than none of you".  True.

My main reason for the trip was to investigate schools and such.  The job front here in NC is bleak and while Scott and I love it here, we don't have family here.  Our last resort scenario was to move back to California, but I had to have an idea of where Ethan could go to school. 

I got into San Francisco around 11pm.  I was very tired and was happy to be greeted by Kamrin and our cousin Hilary.  Kamrin was the only person that knew I was coming, so we made elaborate plans to surprise the family.  To quote my mom's facebook status, "I have sneaky children".  Yes, yes you do.  :)

I have video from all the surprising, but it's for family eyes only.  It is priceless though.  I popped out of the pantry with Kim, waltzed up the stairs with my parents, made an unannounced visit to Erin, and walked around the corner with Mom.  I was also able to pull off a little surprise for my mother-in-law by showing up at the rodeo where she was. 

It was a little stressful having to rely on others for transportation, but overall I was able to have some wonderful visiting time with family and even some friends. 

Many, many thanks to Steven for being a pilot and to Kimberly for being my #1 travel agent.  Thank you for getting me home and back.  Love ya!

Bad blogger!

LOTS has been going on and I just haven't had the patience to try and do any sort of posting.  I have pictures, I have information, but taking the time to sit down and put it here has been a daunting thought.  I mainly keep this blog for our family back in California and they know the biggest news, which was that I went back to California a couple of weeks ago, so it isn't like I needed to jump on here to announce it.  :)

So, I will break down everything into a number of posts. 

• California
• Job(s)
• Loyola
• Pictures
• 4th of July

Here goes it...

Project-NEED HELP.

Recently, a higher up administrator of our school district asked, "We know that Ethan will gain from being included in the typical classroom, but what will the typical kids gain from Ethan?". Really?

So, my new project is this:

I am collecting stories or blips from typically-developing kids about how knowing a child with special needs has affected their life and what they have learned from them. Siblings are awesome, but I would like a stronger focus on non-family members simply because of the point I am trying to make to this ignorant administrator.

Ask around and respond back here or e-mail me. I know that when I wrote the article for Ds News, one of the comments from another student was, "I could be having a bad day and I see Ethan's smile and I don't have a bad day anymore".

I would love to present a huge stack of similar stories.  Can you help?  Please pass along and repost.  Let's make a difference, friends.  We shouldn't have to fight like this anymore. 

Evan's HOME!

Just a quick Evan update...he got to come HOME yesterday! I went up to the hospital on Thursday and he looked fantastic! He has a lot of work ahead of him in the rehab setting since his left side is still fairly paralyzed from the stroke-like episodes, but he is home and doing wonderful! Please continue to pray for him during his recovery process. Thank you!

School's out.

YAY. No more driving 30 minutes each morning and afternoon. We will miss the kids and teachers who embraced Ethan and his classmates very much.

There is so much to say, I just really don't have the energy to. In a nutshell, we highly disliked the school our program was moved to this past year and it will not get any better next year. Some decisions will be made over the summer on what we are going to do for Ethan's placement next year.

This school stuff just gets harder with time and it seems that we are going back to the 50's and having to fight for everything all over again. It shouldn't be like this. I shouldn't have to convince the administration that mainstreaming my child for certain activities is good for both Ethan and for the other students. I shouldn't have to have a top administrator say, "Obviously, it is good for your child, but what can your child do for the typical students?". Really? It is all very discouraging, upsetting, infuriating, and just flat out not right.

For those people who have babies graduating and moving on up, congratulations!

Pray for Evan

One of Ethan's classmates needs prayer tonight. Evan was taken to the hospital and possibly suffered from a stroke and currently has a rising 102 fever. Evan is a sweet little boy who has brought so much to the classroom since he came. Please join us in praying for his speedy recovery! We love you, Evan!

Ethan continues to do well post-op. He didn't even take any pain meds today. He is eating and drinking like normal, too. We are prepared for this to change in a few days. We have yogurt, sherbert, applesauce, and pudding ready to go. Thanks to everyone who continue to check in on him.

Surgery in more detail

First of all, thank you to everyone who was and is continuing to pray for Ethan's recovery! He is doing really well as of today- eating, drinking, and laughing like normal. We are told that by Day 5, we might be singing a different tune, though. :(

So, even though Ethan's tonsils were not terribly enlarged pre-surgery, our ENT did tell us that as soon as Ethan was sedated and sleeping, the tonsils did drop down to obstruct his airway. This should definitely help his obstructive sleep apnea, then. YAY.

We opted to stay overnight in the hospital to make sure that he would drink. Ethan has a history of not taking anything by mouth if it hurts, so we needed to be available to IV fluids. As, my play-by-play mentioned- sherbert was our friend, for sure. We gave him juice by a syringe, a couple of mL's at a time. The coldness of the sherbert was perfect. It was soothing enough to his throat for him to continue eating it.

We could definitely tell when the pain kicked in.

The big advantage of staying in the hospital was having IV morphine!

There was a slight bleeding problem the night of surgery. The doctor thinks that it came from the tongue, but it was still hard to see Ethan coughing up chunks of blood!

Ethan slept ok. He was up and down all night, but he was so groggy and never cried. I think he was just disoriented.

The next morning, I made up some juice, but he started swatting it away after only a few mL's. That scared me a little. But, then breakfast came and he ate all of his grits and then a whole sherbert cup. It was just the initial swallow that was the most difficult.

After eating, we started to see a little bit of our Bubs coming back to normal.


Ethan was especially all smiles when Daddy showed up. Then, they goofed around and I get to take silly pics like this:

A silly pic I absolutely love. ♥

We went home 24 hours after surgery and so far, so good. Keep praying! Spanx!

RAP

RAP is an acronym: Retards Attempting Poetry

Haha funny. No. Not so much.

This was the Facebook status of a teenage boy we know. I didn't really have time to write him a detailed explanation about why his seemingly harmless status was not cool, so I simply wrote "NOT COOL, NOT COOL AT ALL". Another person responded that it was funny to which I said, "NO, this is NOT funny at all". Then, the response that followed is what I wasn't expecting. Teenage boy's Aunt- a friend of ours (actually a friend of Scott's since childhood), defends the acronym and says that they find it pretty funny themselves.

How is it that such small statements can be so profound to knowing a person's true personality? I was in shock by the defense and support of the statement. I simply sent her a message with a link to www.r-word.org and that we expected a little more respect from someone who has claimed to care for Ethan.

From this point, I didn't expect to hear anything, but I did this morning. The reponse was more defense. I am so sick and tired of people getting defensive when it is brought to their attention that something is offensive/hurtful/insulting. Why can't people just sit back, reflect, and think for a moment about what we are trying to educate on? Hey, here's an idea...how about a little respect? Geez.

...Going home!

...ok night, attempting to drink now. Only got 2mL in before he started swatting it away.

...pain returned, difficulty swallowing, more morphine given along with tylenol. Sleeping again, praying for an uneventful evening.

...bleeding has stopped. He is now snuggled up to me resting.

Lime sherbert is our friend