EMHE: My Experience

Just in case you haven't figured out what EMHE stands for...

Yesterday, I had the privilege of working on the new home of the very well-deserving Creasey Family in Lexington, NC for the ABC tv show, Extreme Makeover Home Edition.

I got to the site volunteer check-in right around 8am.  I made sure to take a "before pic" because I knew that I wasn't going to look too pretty afterward.  I was scheduled from 8am-2pm, but ended up staying a little over an hour past that.  On Day 1 of the week, the remnants of TS Ida came through and made everything a muddy mess!  Thankfully, my friend, Ellen, who had worked the site the day before had warned me about all of the mud and to wear boots.  This is when I am thankful for my "man-feet", LOL, because I can wear Scott's shoes.  I was able to wear his hiker boots and not lose my shoes in the thick mud!  And, I can guarantee that if I wore my own shoes, they would have been a gone'er, just like Mr. Rooney's.

The setup was surreal;  the tents, the masses of volunteers, the construction workers inside and out of the house, the spectators, the calmness, the generosity, the charity, the common goal and purpose to build a new home for this family that, probably, none of us even know...AMAZING, truly amazing.

Yesterday, I put on a hardhat with pride.  I moved excess lumber, decking, excess sheetrock, and an insanely heavy piece of something.  Scott said that it was probably some backer board for flooring- that was the worst part of my day because it was so heavy and it threw these RA-stricken hands into shock!  I also helped with crowd control, which was the most boring part of the day.  I ended up taking spectator's cameras and taking pictures for them from a different angle that they couldn't get to.  What else?  I swept and created a makeshift dustpan.  Oh, and I assisted in the moving of one of the big trucks in the driveway so it didn't get stuck in the mucky mud.  That's right, I am not just beauty, but brawn too.  HA!

My big highlight of the day?  Ed winked at me.  For those who don't know who Ed is, this is he! ------------------------------>>>>

So, I was standing on the staircase in the house as part of an assembly line to remove the excess sheetrock from upstairs and I look in front of me at the front door and he's standing there.  (OMG!)  I keep working as to not appear all starstruck, but I had to keep looking and then it happened:  EYE CONTACT followed by a wink.  Yep, now me and Ed are "like this". 

Overall, this was a blessing of an experience!  I am not in a position financially to help that way, but I do have time to give.  I gave time.  Hundreds of people have given or plan to give time.  I am sure some people signed up to volunteer just for the chance to be on TV, but from what I saw yesterday, they have to be very few because everyone was there to WORK (ok, except for some woman who kept pulling out her digital camera to take pictures, which is a big NO NO!  No pics of inside the house were permitted and yet, she kept doing it!  Grrrr...).  It was great to be part of a team to build a dream!

My pictures are not great quality because I, unlike some others, followed the rules and kept my real camera in the car and only used my camera phone outside (again, inside pics of the house were not allowed).

MOVE THAT BUS day is Tuesday, but unless I can make arrangements for Ethan and Loren, I won't be able to make it.  Here's to hoping!  ☺

Lookin' foxy in my hardhat, don't ya think?  The braids?  Well, that was a total improv since I left my hair tie in the car!  UGH!  It was HOT, so I had to do something with that mane of mine!!!


The last pic is just because I had to have a pic of the back of my shirt.  You can see how awful my hair was.  It was matted and gross.  I took a very long and HOT shower last night before crashing before 9pm!  I am very, very sore today, but it was ALL worth it!

Beautiful Song

This morning, I was looking at the new Challenge Farm website.  As I navigated the pages, I was on the "see farm" slideshow and a song began playing with the slideshow.  I had never heard it before, but it is truly beautiful.  It is "Winter Song" by Sara Bareilles and Ingrid Michaelson. 



As I listened to the lyrics, I was also reminded of the many orphans across the world waiting to be adopted before they are given their ultimate death sentence with life in an institution.  I have had quite a few friends who were called to adopt children with Down syndrome or other special needs from Eastern Europe- many of them traveled in these cold months and these lyrics struck me.  Read these lyrics, listen to the song and head on over to Reece's Rainbow, who currently have their Angel Tree project going.  Maybe YOU can make a difference in a child's life today?

Winter Song

Bum bum bum bum bum bum bum bum
Bum bum bum bum bum bum
Bum bum bum bum bum bum

This is my winter song to you.
The storm is coming soon,
It rolls in from the sea

My voice; a beacon in the night.
My words will be your light,
To carry you to me.

Is love alive?
Is love alive?
Is love

They say that things just cannot grow
Beneath the winter snow,
Or so i have been told.

They say were buried far,
Just like a distant star
I simply cannot hold.

Is love alive?
Is love alive?
Is love alive?

This is my winter song.
December never felt so wrong,
Cause youre not where you belong;
Inside my arms.

Bum bum bum bum bum bum bum bum
Bum bum bum bum bum bum
Bum bum bum bum bum bum

I still believe in summer days.
The seasons always change
And life will find a way.

Ill be your harvester of light
And send it out tonight
So we can start again.

Is love alive?
Is love alive?
Is love alive?

This is my winter song.
December never felt so wrong,
Cause youre not where you belong;
Inside my arms.

This is my winter song to you.
The storm is coming soon
It rolls in from the sea.

My love a beacon in the night.
My words will be your light
To carry you to me.

Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?

A Man Worth Loving

Kim's new book, A Man Worth Loving, is out!!!  I have not been able to start reading it yet, but I am super-excited to!  Kim's writing keeps getting better with each and every book, so I want to encourage everyone to go pick up your copy of this new novel today!  I may even be able to work out an autograph if you buy some for Christmas gifts!!!  *wink, wink*

Under Contruction

My friend, Rebecca, is doing me an awesome favor and taking her super-creativeness and putting it to use on my blog!  I didn't give her much to work from, so it will be all her with her creative mind!  I cannot wait.  I am already excited that she found the nasty code that was on here that made my sidebar stuff show up at the bottom.  That was driving me Crrrrrrazy! 

I will be sure to announce when the remodel has been finished! 

Reflections Project Update

Remember the Reflections Project that I told you about here?  Miss Kayleigh WON the contest at her school!  This is the final submission with our Master Ethan, Miss Sassafrass Ava, and Mister Loveypants Ryan.  This picture was submitted for "BEAUTY IS...".  I think that she nailed it, how about you?

Congratulations Kayleigh!  We are SO proud of you!  While I am completely biased to the beauty of these wonderfully and perfectly made children in the project, I would like to say that the loving and accepting heart that Kayleigh has is also how I would define beauty.

Good job Michelle & Michael!  You have one amazing daughter!  (ok, you have TWO amazing daughters AND TWO amazing sons!!! ☺)

Halloween Pics

For Halloween, we went over to Theresa & Chris' for the 6th year- well, we actually missed one year in there because Ethan was in the hospital, but anywho...Ethan was a doctor and Madison and Delaney were chef's.  So cute!  Theresa and I talked about Ethan being Ratatouille, but that would have cost and his costume this year was 100% FREE!  Thanks to our neighbors for lending us the stethoscope and medicine bag (which actually doubled as the candy bag!).  Everyone had a lot of fun this year.  It rained a little, but it was not too cold and even not that wet.  Ethan walked up to all the houses that the girls did!  This year was the first year we didn't bust out a stroller or walker for him to use!  Scott did carry him when we weren't actually walking up to a door, but still!  This is PROGRESS!

After roaming the neighborhood, we came back and had some yummy finger foods!  The bonus of my evening was being able to watch the Bon Jovi documentary that was on Showtime!  Theresa had a free trial of it and was able to record it on her DVR!  Scott didn't exactly share my enthusiasm as that meant that we were going to be staying until close to 1am to finish watching it!  LOL!  It is safe to say that I still love my boys for Jersey, but I do NOT like to see Jon smoking!!!  Bon Jovi will be playing at the Today Show next week and the Wednesday before Thanksgiving...aw, to dream.

Neuro Appt. Yesterday

I took Ethan to the neurologist yesterday to discuss the possible seizure activity and she is concerned enough to want to refer him to the Epilepsy Monitoring Unit (EMU). The stay in the EMU can take up to three days. Ethan will be hooked up to an EEG (Lord, help me already!), meaning that he will have a couple dozen, if not more, electrodes glued to his head in order to catch any different brain activity. I asked if we could put a helmet on him or something to keep him from pulling at the wires, but she said that the turban/rope is usually sufficient. HA. You don't know my Ethan... I think some more arm restraints will be necessary.

Neuro doesn't have a clear reason why Ethan is walking into walls. Remember, this also happens when he is crawling, and he only falls to the right. She pretty much ruled out vertigo, he doesn't have fluid in his ears, and his vision has not changed drastically enough to cause such a ruckus "Can you describe the ruckus?". She also did some reflex stuff to see if there were any other signs of a retethering of his spinal cord. So far, so good on that one, but it did enter my mind. He should NOT be able to retether, but again, this is ETHAN we are talking about. E.T.H.A.N.I.S.M.S

Some people have asked me about sensory seizures. To be honest, I don't know a whole lot more than what the internet says and what Paula Aquilla told me last year. From what I know, they are very hard to diagnose because they are triggered by some form of sensory overload. People that have had them can describe how they feel after they happen, but Ethan can't. That is why all of this is even more difficult.

The definition on www.epilepsy.com is this:

Sensory seizures:

These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.

I guess only time will tell after we get the test results back. Neuro said that we can probably expect to hear from EMU within two weeks. Fun times.

People First Language - A Reminder

Today is the last day of Down Syndrome Awareness Month.  It has been quite the challenge to blog every single day.  I found myself some nights running into the computer at 10pm just to make my 31 for 21 Blog Challenge post!  I made a point to make sure that everything was NOT about Down syndrome to make the point that our lives do not solely revolve around Ethan having Down syndrome.

I have been meaning to revisit the topic of People First Language for a while and just this morning my friend Jenna posted on Facebook this morning about it, so I am taking a moment to touch on it as well.

People First Language is simple:  Whether you have Down syndrome, Autism, freckles, cancer, or one leg, you are a PERSON FIRST.  We are not defined by labels or diagnoses, it is just part of who we are.

Examples:

COMMON INCORRECT VERBIAGE:  He is a "Down child", "Down's Boy", "Down Baby", or a "Down's kid".

CORRECT:Ethan is a boy with Down syndrome.

Down syndrome is just part of his genetic makeup- it does NOT define who he is. 

INCORRECT:  Ethan is a four-eyed boy.

CORRECT:  Ethan is a boy who is supposed to! wears glasses.

Some would say that this is just another act by the PC Police, I say it is an act by parents and loved ones of someone with a disability asking for respect.  Respect.  Respect.  Respect.

I understand that times have changed, and are continuing to change and that sometimes change takes time, so what I ask you all to try your hardest to do is this:  the next time you find yourself not using People First Language, make a note of it to not do it again.  I realize slip up's happen when you first learn new things, but with time, you will use appropriate and respectful language.  And, I know of a precious 8 year old little boy who would very much appreciate it, thank you. ☺

Triad Flight of Honor

The other night, Scott, Ethan, Baby Loren, and I set out to the Greensboro airport (PTIA or GSO) to welcome home the second Triad Flight of Honor.  We had seen the coverage for the first TFoH and were very emotional and we said that the next time around we were going to go and be a part of it.  We were going to go and be a few more bodies showing up to honor, salute, and respect the men and women of WWII who were being treated to a special trip to see the WWII Memorial in Washington, D.C. 

I was emotional thinking about it, but as soon as we heard the roar of cheers from the crowd as soon as the first veteran was being wheeled down the walkway in his wheelchair my heart started racing.  Then it happened.  A man directly in front of me saluted the men.  I choked up right then and there.  I just think that there is a certain level of respect for our military that seems to be lacking these days and to see the respect given to these people who served for US- these men and women who served to protect ME, to protect MY family, to protect YOU and your family...I was filled with emotion and I am very thankful for their service.

Unfortunately, the crowd was a little too much for Ethan, so we had to leave early but wow- what an honor to be there!

(Not the actual plane)  The plane was provided a water salute at departure and arrival.  Pretty cool, huh?

As we left, I started thinking about how I couldn't think of any immediate family members who were in ANY war.  I had to call my grandparents to see if my Poppy was in the military at all, or even Great Grandpa.  Nope, neither one.  Is that odd? 

A Birthday Wish

Happy Birthday to Ethan's Grandma Lynda, AKA:  Scott's Mom.  We hope that your day was fabulous!  Sorry that Ethan didn't get to call you tonight- he fell asleep at 5:30 and hasn't woken up!!!  We love and miss you!!!

BONK!

Ethan bonked his head around 4:30 this morning.  We don't know what he hit, but it could have been his TV stand.  It sure was a bleeder, as you can see from the blood stained band-aid. 

I got the band-aid off in his bath and it didn't bleed anymore, thank goodness.  He did rub it on his carseat, though and it did NOT feel good.  It then started to bleed a tad bit more, but nothing major. 

I am hoping that he just rolled out of bed and hit his head instead of possible seizure activity.  He was on sensory overload last night, so I will just be sure to bring it up at his neuro appointment on Wednesday! 

Confession

Sometimes, I don't want to see other kids' birthday party pictures/Christmas pictures/playdate pictures. It's pure jealousy and selfishness. Thankfully, I said "sometimes". I would really not like me as a person if it was an "always" thing.

I've really been trying to figure out why this *sometimes* bothers me more now than before and the only thing that I can come up with is this: When Ethan was 2, he was still in 12-18 months clothes. He was still so babyish. You don't get upset if a baby goes to a party and just wants to sit there or get into things...you don't care if a baby doesn't care about opening presents.

Now, that Ethan is obviously not a baby anymore- even by appearance, it is just harder. And, I have a slight suspicion that it is just going to get harder and harder as he gets older. *sigh* So, prepare for random "confessions and pity parties" because that's just how things are gonna roll when it comes to my emotions. Please don't judge, bare with me.

More Seizure Talk

I don't remember if I have mentioned this already, but Ethan has been having balance issues. This is a new development- within the past few weeks. He will walk into walls or even just fall over when crawling on the floor. He always falls to the right. My immediate thought was neuro since we already know that he has a smaller cerebellum, which affects balance.

I played phone tag for almost two weeks with neuro, but finally touched base at the end of last week. Ethan's neurologist wants to have his thyroid checked again. I asked if thyroid issues cause you to walk into walls and the response was "the thyroid can make you do lots of weird things". Ok, so I need to take E up to have a blood test. But, our appointment that was originally scheduled for March has now been moved up to next Wednesday.

My friend, Kimberly, asked me if Ethan had any fluid in his ears that may be causing him to be off balance. Hmmmm, Good Point- especially since his tubes fell out a couple of months ago. We saw the ENT today and Ethan's ears are perfect. No sign of infection or fluid, but he had Ethan do a tympanogram to check his pressures and those were fine too. He told us to definitely stick with the neuro idea because the only other thing that really might be causing an issue would be vision, but we have already cleared that too.

One thing that we also discussed with our ENT was how Ethan hasn't been sleeping very well and how on Saturday night after Carowinds, he kept waking up disoriented and kinda freaked out. I was laying down with him, so I saw his face and it was almost like he didn't know where he was and/or who *I* was for about 5-10 seconds. This happened numerous times during the night. I was surprised how many times he woke up considering the exhausting day we had at the theme park.

When I was telling our ENT about that night, he asked me if it seemed like he was having a seizure. I really hadn't thought about it until he said that, but considering the type of seizure I question he may have (sensory seizures), it would make sense ESPECIALLY because of how much sensory input he had during the day.

So, we are back to neuro. This will definitely be a topic of discussion next week. It makes it so hard to diagnose these types of things when the child is non-verbal and can't tell me if he has a headache. I just really think that there is something extra going on and my gut tells me that it's not his thyroid. But hey, I could be wrong.

Down Syndrome & Leukemia Article

http://www.medindia.net/news/Scientists-Identify-New-Chromosomal-Abnormality-in-Leukemia-Associated-With-Down-Syndrome-59671-1.htm Interesting...

A new chromosomal abnormality in acute lymphoblastic leukemia (ALL) that appears to work in concert with another mutation to give rise to cancer has been identified by scientists. They revealed that the latest anomaly is particularly common in children with Down syndrome.

The findings have already resulted in new diagnostic tests and potential tools for tracking a patient's response to treatment. The research, led by scientists from St. Jude Children's Research Hospital, also highlights a new potential ALL treatment. Clinicians are already planning trials of an experimental medication targeting one of the altered genes.

This study is published in the October 18 online edition of Nature Genetics.

"A substantial proportion of children with ALL lack one of the previously identified, common chromosomal abnormalities. Also, children with Down syndrome have an increased risk of ALL, but the reasons why are unclear," said Charles Mullighan, M.D., Ph.D., assistant member in the St. Jude Department of Pathology. Mullighan is senior author of the study, which involved scientists from 10 institutions in the U.S. and Italy. "Our results have provided important data regarding the mechanisms contributing to leukemia in these cases," he said.

Instead of the normal pairs of 23 chromosomes, individuals with Down syndrome inherit an extra copy of one chromosome, in this case chromosome 21. Chromosomes are made of DNA and carry the genes that serve as the assembly and operations manual for life. Down syndrome is associated with a variety of medical and developmental problems, including a 10¬-to-20–fold increased risk of ALL. But patients with Down syndrome rarely have the genetic and chromosomal alterations commonly associated with childhood ALL. Until recently the genetic basis of the elevated risk for these patients was unknown.

The new gene alteration was identified by St. Jude scientists following up on an earlier observation. They had previously found a recurring deletion in a region of DNA duplicated on the X and Y chromosomes. The region is known as pseudoautosomal region 1 or PAR1.

The PAR1 deletion was found only in patients with a subtype of ALL known as B-progenitor ALL. It was most common in children with both B-progenitor ALL and Down syndrome. In this study, investigators screened almost 400 children with ALL, including 75 patients with Down syndrome. The deletion was present in 7 percent of patients with B-progenitor ALL, but in more than half of the patients with both B progenitor and Down syndrome.

The deletion results in a fusion of two genes, P2RY8 and CRLF2. The fusion puts CRLF2 expression under the control of the P2RY8 promoter. As a result, CRLF2 expression jumps as much as 10 fold.

"CRLF2 over-expression identifies a group of ALL cases which were not previously well characterized, and suggests some novel treatment approaches that may improve patient survival. Patients with Down syndrome are particularly vulnerable to complications from standard chemotherapy, and could therefore benefit from novel therapies," said Karen Rabin, M.D., of Texas Children's Cancer Center and a study co-author. She is a Baylor College of Medicine assistant professor of pediatric hematology/oncology.

The CRLF2 protein normally forms part of a receptor where a small growth factor known as a cytokine binds to white blood cells known as lymphocytes. Both the cytokine, thymic stromal lymphopoietin (TSLP), and CRLF2 are known to play important roles in the development of immune cells known as T lymphocytes as well as in inflammation and allergic disease. They had not previously been linked to leukemia.

CRFL2 is the second gene implicated in development of B-progenitor ALL in patients with Down syndrome. The first, a gene called JAK2, was identified in 2008. JAK2 belongs to a family of genes that produce enzymes called kinases. If permanently switched on, kinases can trigger the uncontrolled cell growth that is a hallmark of cancer.

JAK mutations have also been linked to other cancers. Drugs targeting JAK kinases are already in clinical trials against a variety of blood disorders in adults. Additional trials are being planned against other subtypes of childhood ALL.

In this study, researchers reported a significant association between alterations in both the CRFL2 and JAK2 genes. Almost all JAK mutations were observed in patients with CRLF2 alterations. Almost 28 percent of children with Down syndrome and ALL had changes in both the CRFL2 and JAK genes.

"It has been a mystery as to why the JAK mutations in Down syndrome ALL are different from those seen in other cancers," Mullighan said. "Here we show that the JAK mutations in ALL are almost always observed together with a chromosomal alteration that results in over- expression of CRLF2."

When both the JAK mutation and increased CRLF2 production were introduced into white blood cells growing in the laboratory, those cells were transformed and no longer needed cytokines to grow. Neither genetic alteration on its own produced the same effect. Researchers also reported their impact could be weakened by the addition of drugs that target JAK mutations.

"We showed that the two proteins, CRLF2 and mutant JAK2, physically interact, and together transform white blood cells. This work has identified a new pathway contributing to the development of leukemia," Mullighan said. A next step is to determine if these mutations also interact in mouse models of ALL.

Parenting.com

Because October is Down Syndrome Awareness Month, the good folks over at Parenting.com highlight children with Down syndrome! Last year, I submitted a picture of Ethan that I adore from when he was two years old.

This year, I submitted one of my favorite pictures that Kayleigh took for her Reflections project- plus, I thought it would be really cool for a 15 year old to see their work gone national! :)

I was looking through the albums tonight and found that our picture was put in album 6! You can see it here!

What I found interesting was that both years, Ethan's picture is #17 in the album. It's a good number- Scott and I were married on the 17th. ☺

In the same album as Ethan are our friends, Kayla and Karli!!!

I haven't made it through all of the albums, but also in the same album as Ethan is a baby in Mariposa!!! So, to all my 'Posa family, be on the lookout for an extra-cute little bundle of Trisomy cuteness!

Make A Wish Reunion @ Carowinds

Every year, we are invited to Carowinds for a Make A Wish family reunion.  MAW sends us a parking ticket and has our admission tickets available for us at the door.  This year, Scott could not go because he was a vendor at the Black Walnut Festival.  Since Scott couldn't go, I asked Mary if she could go.  When she said yes, I asked Ethan's friend, Gracie, if she wanted to go to (really, I asked Gracie's parents).  Gracie excitedly responded while jumping up and down, YES!  Once I told Ethan that Gracie was going to get to go, he just smiled.  He loves his Gracie!!!

Well, with Mary getting the flu earlier in the week, she wasn't able to go with us today so it ended up just being me, Ethan, and Gracie.  It worked out that we also met up with our friends, and fellow MAW family, The Barnes'.  Gracie was able to go on some of the bigger rides that Ethan couldn't because she could ride with The Barnes'.  Perfect.

The weather was less than perfect when we got there, it poured rain actually, but it only did that for about 15-20 minutes, THANK GOD!

Ethan had a fair sensory day.  He basically freaked out on the rides, but still smiled and never cried, but he was fine with the other people and the noise.  He was so sweet- while Gracie rode a ride with The Barnes family, Ethan and I waited on the exit ramp.  I had him in an area that didn't get in anyone's way.  He was such a sweet greeter to all the exiting passengers, but kept his leg out for space distance...all while trying to give high five's to everyone that walked by!  Sweet boy...


What else?  Gracie got her face painted a Fancy Butterfly and the young gentleman that painted her face saved the day when he came running after me with my camera!  I had left it after paying!  OMG- that would have sucked! 
 
(insert frustration here.  Blogger is not my friend this evening!  I just lost half of this post.  Grrrrr....)



The forecast for today was not the greatest, but not too bad either:  Rain in the morning and sunny skies after.  We could deal with that.  I figured it would rain on the drive down to Charlotte- which it did- and then we would be free of rain.  Nope.  But, it wasn't that bad.  It poured on and off for about 15-20 minutes after we got there.   It was not cold though, so the rain just made it humid and sticky.


So, we rode rides, had lunch, rode more rides, and before leaving we HAD to get a funnel cake.  It's like amusement park law that you must have funnel cake!  LOL.  We shared...Ethan even got the really soft pieces. 

I am so happy that Gracie got to go with us today!  She is the most loving, kind-hearted, accepting, God-loving, sweet, innocent, gracious girl.  We are so blessed that she loves Ethan so much!  And, he loves her back!  You should see how Ethan lights up as soon as he sees Gracie.  But, she also gives him tough love when he needs it.  I hope that she is in our lives forever because she and Ethan have a very special bond.

Ethan was exhausted by the end of the day (so was I!!!) and he zonked out within five minutes out of the parking lot.  But, he woke up after we dropped Gracie off with her Aunt in Concord and he never went back to sleep.  He is now sleeping like a log.  

To sum up, I will quote Gracie as we were about to leave..."Today has been the BEST day!".  ☺

(I gotta say, I don't know what is going on with Blogger coding and stuff, but it's getting on my nerves! My page is all messed up and this post has hit a bad nerve as far as how it is looking. Ok, maybe I am a tad tired and cranky...)

Pray for Polly

Polly is my friend, Gillian, from Downsyn's daughter who was just recently diagnosed with Moyamoya Disease. Polly will be having at least two brain surgeries in order to keep the disease from progressing. Ethan was tested for Moyamoya back in May and I remember the fear of the possible diagnosis. Please pray for Polly and her family!


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Random Question

I have a question for the moms out there, most likely with a child with special needs...

If you have a non-walking toddler child and an infant, how do you handle them both at the same time? Stroller? Sling? By being MEGAMOM and carrying BOTH children?

When I have my friend's infant daughter, I put her in the Baby K'tan and walk Ethan one-handed with my other available hand. The other day when we were at his prior school, he was not as cooperative with this and it was more difficult. If I had to carry him, I could have, but I didn't want to. But, it got me thinking about the older kids out there that don't walk at all. What do those parents do? If Ethan weren't walking, I would probably still put the baby in the sling and put Ethan in the stroller. That seems easiest. How about you?

Friends

I have had Ethan home from school the past few days because of illness in his classroom.  He has been ok and I just don't want to run the risk of him getting the flu- which Ms. Mary may have.

I took Ethan over to his previous school for a visit.  Oh, how we miss it.  It was like a visit home.  He was able to see his favorite custodians, favorite secretary, favorite principal, favorite teachers, and mostly- his friends. 

No, these kids don't call him, but if you could see the looks on their faces when they saw Ethan at their school again.  It was like a kid at Christmas!  All of them say that school just isn't the same without him.  We saw other kids- kids that I don't know- signing in ESL (Ethan sign language) "hello".  THEY REMEMBER!  A lot of these kids haven't seen Ethan since June and they remembered how to say hello to him!  My heart about melted.

One moment that really stuck with me...

We were in a classroom and a boy that knew Ethan from last year told a boy who didn't know who Ethan was that Ethan didn't talk.  Then the "new" boy asked me why he didn't talk.  I said that he just talks with his hands since it is harder for him to use his voice.  Then, a little girl sitting at the table didn't even skip a beat when she said, "He just does things a little different.  We are all different and that's ok.  He just uses sign language." 

 How completely precious is that?  How wonderful that this little girl, 7 years old, sees it and she gets it.  We are all different in one way or another.  But, we are also more alike than different.  

SPD & Nail Trimming

It sucks.

Last night, I was seriously asking God WHY me?  If I am going to have a child with sensory processing disorder {SPD}, then WHY do I have rheumatoid arthritis {RA}?  And, if I am going to have a child with SPD and have RA, then why is my RA the worst in my hands?  WHY, WHY, WHY???

We have had a limited amount of non-freak out nail trimmings.  My mom cut Ethan's nails in a snap last year...I need her trick.  Ethan pulls his arms, wiggles his fingers, kicks his legs...the grip I need to keep in order to actually clip his nails makes my RA-stricken hands beg for mercy.  It is such an ordeal.  We either have to pin him down to the floor, or I need Scott to hold him down.  I know it's frightening for Ethan and I know he can't help the freak out's, but oh.my.gosh.  We have to figure something out!

Pray for Noah

Noah is a sweet little boy that I have "met" through my friend Kimberly.  Kimberly is friends with Noah's parents in Texas and I have been able to speak with Noah's mom, Amy. 

Noah was diagnosed with high risk pre-B ALL (Acute Lymphoblastic Leukemia) back in July.  Noah also has Down syndrome.  As many can imagine, my heartstrings are pulled when I see another child battle the beast of cancer like Ethan had to. 

Noah has been able to stay home after treatments, which I think is amazing since we were in and out of the hospital so much, but Noah has just been admitted to the hospital with pancreatitis caused by one of his chemo meds.  He has been complaining of pain in his back and neck for a few days- I was even on the phone with Amy yesterday and could hear Noah growling in pain, poor bubs.  Today, an x-ray was taken and the pancreatitis was found. 

He will be in the hospital at least a few days, possibly longer.  His counts have been very poor lately and Amy told me that he is very pale, weak, and has dark circles under his eyes.  The fear of relapse is always there for a cancer mom, I can assure you that is a fear that never goes away, so I am thanking God for pancreatitis and not a relapse. 

Please pray for Noah's full recovery from this setback and that he can continue on with his leukemia treatment so he can claim victory over the beast!  You can visit and offer words of encouragement to the family on Noah's Caringbridge site here.

Thank you!!!