Naughty or Nice?

Stolen from Renee...Are YOU on Santa's Naughty or Nice list?! You can click here and put in your name to find out. Careful though, those elves are brutal! Here is what we got.

Kristen:  Still very much on nice list, but must continue good behavior. Should eat more vegetables instead of junk food. Was very polite last Thursday! When doing chores, needs to do them as well as possible. Often exhibits good behavior. 

Scott:  Nice, but with a few naughty marks. Neatness needs improvement. Behavior has been good sometimes, not so good other times. Manners could still use some attention. Was very nice last Monday.

Ethan:  Has been nice most of the year (not just near Christmas)! Makes others happy. Could share a little more, however. Politeness is sometimes very good. Can be great listener.  

Some very right on points.  How funny is that?  LOL. 

Holy Platelets Batman!

Ethan had his 4 month HEMOC (hematology/oncology) checkup today.  All good!  It's been a while that we have seen his platelets so high!  They were actually above the normal range!  It's so great to go to clinic and get a good report.  Praise God!

Ethan also had his GI clinic appointment.  Our doctor is frustrated with what has been going on with the CHOP approval, so he is going to be making some calls.  YAY. 

Being the wonderful social networking site that it is, one of our friends announce on Facebook that she had an extra ticket for the hay ride at Tanglewood's Festival of Lights.  We jumped on the chance to be first in line to respond to said announcement. 

It was a rush to get over there- we didn't leave the hospital until 5pm, had to run home (20 minutes away), get bulky jackets and blankets for Ethan and Loren, then drive over to church (another 15 minutes), pick up ticket, drive to park.  It didn't help that there was a fairly bad accident, so we ended up being a little late, but many thanks to everyone for waiting for us!  After Ethan got over the initial freakout, he seemed to enjoy it! 

Ohhh, Snapples!

Ethan was released from the hospital yesterday morning with a mobile jet pack EEG.  I knew that it would be hard to duplicate a sensory overload "episode" in the hospital, so the doctor's finally agreed to let him out with a mobile pack so we could try and load Ethan up on as much sensory overload stuff as possible (sounds torturous, doesn't it?). 

I was at home with Hope and Loren, so it was up to Scott to tackle this task.  I told him to take him to the mall, restaurants, and the mack daddy...Chuck E' Cheese.  Due to the fact that Ethan was already sleep deprived from not sleeping much in the hospital, those places should have thrown him over the edge.  They didn't.  He was, quoting Scott, "PERFECT".  Say what!?!?

Then, it hit me.  Ethan had been wearing the EEG box on his back.  It weighs at least a couple of pounds.  {Sensory Moms may know where I am going with this...}  Anyone that has a kid with sensory issues knows that a possible tool to "ground" them is to use a weighted blanket or weighted vest.  The amount of weight used is supposed to be 2-3% of the child's body weight.  If you take Ethan's weight of 42 pounds, 3% is 1.26.  Ethan has been completely GROUNDED by the weight of the pack!  Geesh.  That's perfect. 

Even with my theory, we still took Ethan out again last night.  First, Chick-Fil-A because there was a horn quartet playing right in the restaurant.  We sat as close to them as possible so Ethan got the full affect of the loud music.  Then, we were off to the mall...again.  We took the pack off of him and put it in the back of the stroller and then went up and down the mall, into stores, went up and down the elevator, and rode those little cars.  On our way out, we ran into our friends The Lyons Family.  Michelle is an OT and I told her my theory to which the response was basically, yeah- the pack is likely defeating the purpose.  *sigh*  Before leaving, we passed a wind tunnel thingy and decided that we could do one last hoorah since the wind was supposed to get up over 70mph.  Scott, Ethan, Paige, and Chase piled in the tube and let the wind blow, but it really didn't, so that was a wash too but still kind of funny to see.  Trusty Michelle had her camera on her and got to take a pic.  I think the wind just blew down instead of all around the "tunnel".  Oh well, we tried.

Scott just took Ethan up to the hospital to have the EEG removed and the doctors wanted to keep it on another day.  We decided against it because we really think that he is not going to go into a sensory overload situation while wearing the pack, which puts us in a tricky position.  I don't know if we will ever be able to get a doctor to see what we are seeing.  From this point on, we will just monitor and document if he has any episodes and hope and pray that they are not seizure related.

Zhora...Please Help!

I am SO behind on this, but there is still a few hours left so I am running with it while there is still a chance!  Bethany has been hosting a chance to win an Ipod Touch or a Handmade Quilt!  All you have to do is donate at least $10 to be entered in the drawing!  Go here to read more about it and to DONATE!!!  :)

You have all clicked over to Bethany's post, right?  Ok, so now you know that this giveaway was prompted by a plea from our friend, Lisa.  Lisa's little boy, Daniel, has a striking resemblance to Zhora!  Can you see it too?  Zhora is on top and Daniel is on the bottom. 

I have spoken with Lisa about her desire to find a forever family for Zhora because her heart is pulled toward him because of his likeliness to her Daniel.  She wants so badly for Zhora to have a family who will love him and nurture him and, best of all, keep him from being transferred to an institution in Eastern Europe where his likelihood of survival is slim.  I know that if Lisa and her husband, Dan, could hop a plane and go pick up Zhora today they would!  But, like many of us affected by these economic times, they just cannot.  That doesn't mean that we can't do all we can to up the amount in Zhora's fund to help another family bring him HOME! 

Please consider donating to help out Zhora!  All of us in America are so richly blessed even when we think we are in the pit of despair.  Our pits are still better than the "best" arrangements in other countries.  Thank you!!!

Blessings Runneth Over!

It has come to my attention that I have not mentioned a very important event in our lives lately.  I am not really sure why I haven't, and if I have it was only briefly mentioned.  Here you go:  Due to the current state of our economy, Scott was laid off a little over a month ago.  Scott's employers are our dear friends and we know how hard of a decision it was to make to have to let Scott go.  We know that it tears them up- possibly even more than it does us.  So now, we are in (once again) unchartered territory.  We are both unemployed.  We have job applications out all over- nothing, no response.  Unfortunately, we are joining the other thousands of people also out of work and desperate. 

Ideally, Scott will be the one to find work so that I can continue taking care of the girls and being the one able to take Ethan to his appointments.  No offense to Scott, but (and he will admit this to you as well) he is just not the one to be Mr. Mom.  Obviously, if that is what God has in store for us, then we will have to roll with it and praise Him for providing.  Yes, Scott has applied for unemployment and he did qualify.  This lessens the blow a little bit, but remember that we went from a two-income family two years ago to one, to now close to none.  This is a very scary time for our family!  It is stressful, frustrating, and emotional.  We may lose our house.  This is a reality that scares me to the core and is also embarrassing and humiliating.  To say that this isn't fair is an understatement, HOWEVER, I have peace that everything will be OK.  I have FAITH that we will be provided for.  I have a few blessings that we have received to tell you about!

First of all, I did NOT have peace originally.  I did not have peace for a while actually.  I was not sleeping, I was up all night scouring the internet for possible jobs, I broke out worse than a teenage girl going through puberty, my hair started falling out...then, after days of praying, I felt beaten down and I remember falling asleep pouring my heart out to God.  I, then, slept probably the hardest that I have slept in a while and I woke up refreshed and I had peace.  You know what happened, literally, later that day?  I got the call from the church about giving us a fully-decorated Christmas Tree.  After the tree was delivered, I got an e-mail from the family that decorated the tree and they were touched by our family's story and they wanted to put some presents under that tree for Ethan!  Some other blessings given to our family:

*  Card with love money from my Mom
*  Numerous lunch dates with friends, where my lunch was paid for
*  Card and love offering from dear friends
*  $20 Gift Card to Wal-Mart from anonymous "Sister in Christ"
*  Thanksgiving Dinner, full with HUGE turkey, stuffing, corn, potatoes, cranberry sauce, and apple pie from the Men's Small Group at church.
*  Marital Counseling scholarship courtesy of River Oaks and Surecord
*  Harris Teeter (grocery store) gift cards and Chili's gift card from our dear friends
*  A beautiful handmade scarf from Hip Chic
*  Financial support from River Oaks
*  Blog Makeover by Rebecca Phong
*  Gifts for Ethan from The Lofgren Family
*  Prayers Galore.  :))
*  Gift Card to River Birch Lodge for lunch- just me and Scott, "us" time
*  Beautiful letter and love offering from anonymous fellow church family

I have a feeling that I will be adding to that list, so come back to look for any additions! 

Now, I would like to share with you something that is so grand, so wonderful, so humbling, so beautiful, so loving...

My friend, Bethany, has known about our situation for a while.  She was quite upset with me when I said that I wasn't going to put up a Christmas Tree and I truly believe that she would have driven the close to 6 hours from Northern Virginia to come and put up some flippin' Christmas decor at my house!  Do NOT underestimate this woman!  LOL!  Seriously, do not underestimate what Bethany is capable of.  She had asked me for a Christmas "wish list" a while ago, which was one of the hardest things to do by the way!  I figured that Ethan might get some clothes and maybe a few toys.  I had NO idea what was in store!  Seriously, this woman is sneaky.  When the doorbell rang, I had absolutely no clue who was going to be standing there (with a camera attached to her face, of course) to surprise me along with her friend (and now MY friend), Linda.  I was seriously shaking at the knees.  Of course, part of that was probably due to the fact that I wish my house was cleaner- LOL! 

I am now going to refer you over to Bethany's post about the deliverance of said Christmas wish list.  She captured some special pictures, one of which was Scott opening a gift of "cookies", except these cookies were plastic with little black strips behind them and green with some pictures of President's on them.  It has been a while since I have seen my husband smile with joy and I see joy in his face when I look at the picture that Bethany captured of him.  It makes me cry to think about it, but a good cry.

Please go read Bethany's post from her perspective.  I think that you will be blessed by how giving has blessed her and how it has blessed US.

We are so very humbled by the amount of love, generosity, and giving that was organized by Bethany and given to our family.  We would like to say a huge,

THANK YOU!!!

Two words that just don't even seem to be adequate enough right now, but it's all I have at the moment.  :)  Much love to you all!!!

3 Day EEG

Sorry that I didn't update before actually coming into the hospital, but anywho...

As, I wrote here, Ethan was referred to the Epilepsy Monitoring Unit (EMU) to see if he is having any sort of seizure activity.  When he had a sleep-deprived EEG back in May, it showed abnormal activity but no seizures (that's good!).  Our concern all along has been "episodes" he has post sensory overload.  Most recently was his behavior after our visit to the amusement park at the end of October.  The episodes he has have diminished significantly since implementing a sensory diet, so we definitely feel that they are sensory related.  We would just really like to rule out if there is anything going on in the brain when he has these episodes or if they are autism spectrum related. 

Anywho, we checked into the hospital yesterday morning for Ethan's 3-day EEG.  I chose to have Ethan sedated since putting the 20 or so wires on his head was not going to go over very well with him awake.  Thank GOD that we did that.  He slept through the entire application process and now he doesn't pull at the wires or anything.  He has been such a trooper.  I am thinking of asking for sedation to have the wires removed!  LOL...ok, I'm serious! 

I don't think that anything is going to show from this stay because I haven't found a way to duplicate major sensory overload here in the hospital.  The doctor's have mentioned possibly doing an ambulatory EEG where we could leave the hospital with a portable pack and go to Chuck E Cheese or something that would typically send Ethan into an episode. 

We'll see what happens...does that answer your questions, Mommy?

Day 12 of Giving

Today is the last day of the 12 Days of Giving being hosted by Bethany over at Life With Bubba, Chicky, & Nika.  It has been wonderful seeing how you, others, and myself can give, and not always necessarily financially. 

I, honestly, didn't know what I was going to be able to do today since I am in the hospital with Bubs (post to follow).  As it turned out, I was able to do the same thing (kinda) for two friends.  I was on my way out to watch my friend's daughter dance in a competition- it was going to be my respite from the hospital.  As I was getting ready to leave, a friend of ours brought us his laptop to use in the hospital (SO SWEET).  He walked out with me and it just turned out that he needed to have a friend to talk to.  I did miss out on Syd's competition, but I felt that my friend needed me more.  Time, fellowship, laughter...good time.

Also, today the hospital held their annual "Remembrance Service" for the children under the care of the hospital that had passed away.  Olivia was still a part of this service, so I joined Karen for it.  I felt very grateful that Karen told me about the service and that I could be there to hold her hand.  Olivia has especially been on my mind lately.  I miss her so much.  I have been able to tell others about Olivia multiple times over the past two weeks.  She was such a special part of my life and I feel so privileged to have been able to love her and help care for her. 

I happen to think that I got more out of my time with these two friends today than I gave them.  Friendship is awesome, I highly recommend it.  ☺

 

Day 11 of Giving

 
We have spent many, many nights in the hospital with Ethan.  The rooms have the bed, of course, and a "daybed" for the parent.  I always sleep with Ethan, but on those days that Scott was also there and I needed a nap from the all-nighter the night before.  The daybed is a vinyl cover, so it's not very comfortable for long periods of time.  We figured out that the size of the daybed cushion was the same as the hospital bed, so Scott started making it a pillow top bed.  He would take extra sheets and blankets, fold them so they were nice and smooth, and then put a fitted sheet over them onto the cushion.  It made the bed away from home a lot more bearable. 
 
I was outside the hospital talking to a friend when I saw a gentleman walking in with a big comforter.  Since it was cold out, I mentioned how it would be nice to have a blanket.  He mentioned how having a piece of home makes staying in these beds/daybeds a little easier and I was able to share with him our tricks.  As I am telling him, another woman was walking by and she was also very curious about our comfy tricks for the beds.  Her son has been in the hospital for two weeks now and she is not getting much sleep.  I hope that both of them are able to sleep a little more comfortably tonight.

Day 10 of Giving

Today's giving just kind of happened really.  It was not planned- more on that later...

We had some wonderful visitors this evening that blew our socks off with an ultimate surprise- again, more on that later as I am still processing it all.  One of our beautiful visitors also has a child with Down syndrome that needs to have their fluids thickened, but only to nectar consistency.  We have some extra, so we were able to give a few bottles.  Anyone who uses the thickener knows how expensive this stuff can be and we are very fortunate to have had some extra to share.

Much love to you all tonight. 

Happy Birthday, Jennifer Kay!!!

Today is our niece's 23rd birthday!  WOW!!! 

Happy Birthday, Jenn!

We love you and miss you SO much!  We are so proud of you and all of your accomplishments!  Now, get your boo-tay down here to visit!  :)

Day 9 of Giving

For the past few weeks, I have been taking Hope (a toddler I care for sometimes) over for playdate with my friend Carrie's girls.  It is certainly a transition for her to be around other kids and it gives me a chance to get to socialize with Carrie.  Today, I brought Carrie a hot chocolate from Panera Bread.  It was kind of only warm chocolate by the time I got it to her, but Carrie's daughter Ella enjoyed it too!  A little gift of warmth and everyone is happy.  :)

Day 8 of Giving...Praying for Liz!

Today, I am SHARING.   I am sharing something with you that is very close to my heart.

My friend, McKenna's, sister-in-law Liz was recently diagnosed with a cancerous tumor above her knee- OSTEOSARCOMA.  Liz is a very beautiful and active 14 year old young woman, and she is NOT going to let this little thing called cancer get her down!!!  This young lady is so mature and has such a GREAT attitude about her upcoming battle.  She amazes me and I have never even met her!  Liz's blog name is LIZ IS A SURVIVOR.  Yep, I would have to agree with that statement!  Please keep Liz and her family in your prayers and thoughts as she fights the beast.  CANCER SUCKS.

Be sure to stop by Liz's blog and leave her a note of encouragement!  Also, if you are on Facebook, be sure to go by TEAM LIZ's group page and join to show your support for her!

Day 7 of Giving

Today, I decided to scroll through my address book with my eyes closed and pick three random people.  I then sent them e-cards to let them know how much having them in my life means to me.  I hope that those three people's days were a little brighter today!

Day 6 of Giving

Today was easy.  I went to the grocery store and saw that there were bags for sale that were filled with food to go to the food pantry's.  So, I bought a bag.  There was, to my surprise, quite a bit of food in the bag!  May someone's holiday be enjoyed with a full belly!

Day 5 of Giving

Today, I really didn't do much.  Scott GAVE me an extra few hours of sleep this morning.  I did not get up until after 11, I think!  WOW!  But, it felt SO good.  I love me some good sleep, LOL.

My friend, Michelle, invited me and Ethan (Scott was going to the Wake Forest soccer quarterfinal game against UCLA) over while she made a boat load of cookies.  Since Scott was going to be gone anyway and I could use some time of friendship, Ethan and I were off to take in the delicious smells of baking cookies.

I decided to make a quick batch of deviled eggs before I left and took them over for her family.  I am not sure if you can even compare deviled eggs to cookies in the giving department, but that's all I had and that's what I did.  LOL.  Michelle and I both gave each other great conversation and fellowship.  We should all make time to connect with our friends.  ☺

And, Ethan was able to show his love of feet and wiggling toes when Kayleigh put her feet up on the coffee table.  So glad that Ethan is not shy at all about his little fetish...my feelings on that may change as he gets older.  

Come Lay "Em Down

Come Lay 'Em Down

By:  Need To Breathe

Come down to the river
Come and let yourself in
Make good on a promise
To never hurt again
If you're lost and lonely
You're Broken down

Bring all of your troubles come lay 'em down
All you sinners
And the weak at heart
All you helpless
On the boulevards
Wherever you are now
Whatever evil you've found

Bring all of your troubles
And come lay 'em down
We're all tied to the same old failings
Finding shelter in things we know
We're all dirty like corrupted small towns

We'll bring our troubles
We'll bring our troubles lay 'em down
All you rich men
And the high above

All those with And without love
All you burdened Broken down
Bring all of your troubles
Come lay 'em down

I ♥ ♥ ♥ this song!  The lyrics really speak to me.  I also imagine dancing in the fellowship hall at Challenge Farm with the kids to this song.  ☺

Day 4 of Giving

I am not sure that this, technically, qualifies but I am rolling with it anyway...LOL.  On this 4th day of the 12 Days of Giving, I want to give you a REQUEST.  My request to all of you is to become a registered bone marrow donor and a blood donor.

When Ethan went through leukemia treatment, he received countless units of blood product- red blood, platelets, IVIG...  My son's life was saved because a selfless person walked into a Red Cross tent, bus, office, or event to give blood.  There is no way for us to ever know who gave a part of themselves in order to save lives- one of which was my son.  We are forever grateful.

While Ethan never needed a bone marrow transplant- THANK YOU GOD!!!-, both Scott and I decided to sign up on the bone marrow registry when they held a drive at the hospital.  It was a simple blood draw, we got our donor cards in the mail, and that was it.  Then, one day a call came...

I got a call from the registry asking me if I was still willing to be a bone marrow donor.  OMG!  OF COURSE!  I was a 6 for 6 match for a 50+ year old man with lymphoma.  I was sent the paperwork and I immediately filled them out.  Everything was set to go to the next step UNTIL I volunteered the information that I have rheumatoid arthritis.  Nowhere on the health questionnaire did it ask about RA, but because it is a autoimmune disease, I felt the need to ask and disclose.  Sure enough, RA is on the black list of conditions that makes you ineligible to donate bone marrow.

I was crushed.  I cried for this man whose life was literally within me and that I couldn't save- or at least try to save.  I pray that there was another person out there who was a match and able to provide what I could not for that man. 

I highly encourage you to go to the National Marrow Donor Program and the Red Cross and become a donor today!

Day 3 of Giving

Today is Day 3 of the 12 Days of Giving and what did I do?  I gave a SMILE.  Yes, a smile.  I saw someone who was, obviously, having a bad day and I just gave them a smile.  She was able to even crack a smile back.  Sometimes you don't need words to encourage someone and lift them up, sometimes a smile is all they need.

Day 2 of Giving

On this 2nd day of giving, I gave an extra dose of hugs and snuggles to my Hope (a toddler that I love and care for some days).  Today's gift really wasn't hard to do as it is so easy to love on children, but I made sure to give just that little extra so she had an extra sparkle in her eye.

12 Days of Giving

My friend, Bethany, is hosting 12 Days of Giving for the first 12 days of December.  This is about all types of giving, big and small.  I am going to have to try and be creative here...LOL.

So, on day 1 of 12, I gave TIME.  I really am not in a position financially to give much that way, but I do have time.  I gave my time to my church, helping adhere address labels for a congregational mailing.  Many would think of that as petty work, but it was quite enjoyable to be able to give back to our church who is always right by our side praying for our family.