Wordless Wednesday – Pitiful

(Not an official WW participant, but I thought these were perfect!)

Prayer Requests

Kalen is an old friend from high school. He and his wife, Melissa, have a little boy named Aidan. Aidan has had a terrible fall, leaving him with severe brain trauma. The family has created a blog @ http://www.prayersforaidan.blogspot.com/. I have never had the chance to meet Melissa, but what I know of Kalen, this little guy has the best Daddy and I know that Kalen, Melissa, and Aidan would appreciate your prayers.

There is a button on my sidebar for KayleighAnne Freeman. KayleighAnne needs a miracle, or she will be going home to Heaven soon. Please say a prayer for the family.

And, lastly...I have an unspoken request for someone very dear to me and whom I love very much. I cannot and will not release information, as it is too private, but if you could just say an extra prayer tonight.

Hug your babies. Give them that extra kiss. Don't worry about the mess, you can clean it up later. Just love them.

Thank you.

And, thank you to those who have prayed over my leg. It is feeling MUCH better!

Crap week

The other day, Kamrin called me to tell me that my Mom was in an accident.  She was on her way home from taking my nephew, Kristopher, to Valley Children’s for the flu.  My parents live in the mountains, so the drive back home is windy and has lots of hills and even some cliffs.  My mom was about 15 minutes away from home when the accident happened.  She was coherent one minute and head-on with an Oak Tree the next.  The airbag deployed and Kristopher woke up screaming. 

I am happy and thankful to report that both my Mom and Kristopher are OK!  Kristopher has seatbelt burns, but that’s all.  My Mom is sore and initially thought that the airbag broke her nose, but it’s ok too. 

My sisters and I all begged for her to go to the hospital after the accident and, the stubborn woman that she is, refused.  She promised to go the following day.  So, my Dad took her to the hospital the next day and they made sure that she didn’t have any internal injuries or broken bones.  My Dad is going to get her checked out with a neurologist just to make sure she didn’t have some kind of seizure or something.  They think that she has sleep apnea, making her exhausted to where she fell asleep at the wheel.  Either way, it cannot happen again!  Mommy- we love you too much to have anything happen to you, so PLEASE see the doctor that you need to!!!

This accident could have been so much worse if only 5 more minutes up the road.  Thank you, GOD, for their protection! 

Oh, and as you can see- the car is TOTALED.

Yesterday, I tore my calf muscle pretty bad…walking.  I would LOVE to come at you with some GRAND story of running to save a stray dog from being hit by a car or some crazy stuff like that, but sadly- I was simply walking.  I was walking up the hill at Ethan’s school before the parking lot and put a little skip into my step and then it happened.  POP.  Yes, my calf muscle POPPED.  And then the pain set in.  No weight bearing at all was tolerable.  Frik frak it hurt.  So, I broke down and went to the doctor so I could get some crutches and he went an extra step and gave me this rockin’ orthopedic boot too!  (Sarcasm, you sense it!?!?)  But, as much as I hate to admit it- this boot is working!  Good thing, because Ethan thinks it’s funny to pull Mommy’s crutches out from under her…

Here’s to hoping and praying that the week goes better!

JACKSON HAS A SPONSOR!!!

I just found out tonight that my Jackson has a sponsor!!! I am so filled with positive emotion right now! This boy has a permanent place in my heart and to know where he came from and from what Challenge Farm is doing for him, I am overjoyed that his place on the farm is secure. BIG thanks to Jackson's sponsor!!!

Melanie Kiana Dahlem

Six years ago, my beautiful cousin passed away. She was a beautiful, bright, smart, loving, cheerful young lady taken too soon. I am not sure if we will ever understand why Mel got sick or why she was taken from us, but I do know that she is with God and that is the only thing that brings me comfort with Mel being gone.

MISS YOU MEL!!!

What I am fighting for...

I have never participated in Wordless Wednesdays, but if I did, this would be my post for tomorrow! This is only a sample of the love and attention Ethan gets from the students at his school and this was not staged. These girls help him, guide him, teach him...and Ethan teaches them too! This is what our lovely school district is trying to take away from all of the kids. Remember the awesome things that his peers wrote to him? Click here for a reminder. Inclusion is not only for the child with special needs, it is also for the child who will be the accepting mentor. Our society benefits from both.

He lives!

Thursday Recap

Thursday was such a busy day! 

First, Ethan had swimming at the YWCA with his class.  I usually go and swim with him.  The first pool that we got into was abnormally cool and Ethan even caught his breath a little after getting in.  The aquatics director said that the other pool was available for us to use and that it was much warmer, so we got out of Pool A and went on over to Pool B.  What a difference!  SO much better!  Ethan LOVES to go underwater!  I hold his mouth shut, count to three, and then plug his nose while dunking him under.  He keeps asking for MORE, MORE!!!  Another thing that Ethan is going to do is break a record for longest yawn!  That boy has had marathon yawns since he was a baby and he had one Thursday that I think almost lasted two minutes!  Makes me tired thinking about it, and yep- just yawned myself. 

After swimming, I took the papers that SSA had requested over to them.  Then, I went down to the Children’s Home to see about volunteer opportunities.  It is a place that I have thought about giving time to.  Ok, so it seems that I don’t have any time lately, but if they needed me, I would make time.  After that, I drove out to have lunch with Scott, Heather, and Bill.  That was a treat- everyone was in a goofy mood, which is always a lot of fun. 

After lunch, I had to go over to pick Ethan up from school for his neurology appointment.  When I got to school, he was down in Mrs. M’s Kindergarten class.  She just loves him.  They were having an Easter party with little poundcakes made into the shape of an egg, with pudding as the yolk (very cute), cotton candy, and punch.  He didn’t want to leave!  Mrs. M. definitely spoils Master Ethan! 

As we were leaving, I could see some of the students peeking into the window watching Ethan.  These are the same children that love to play with him at recess and help him walk.  Ethan was being a little stinker until we opened the door and he saw his girlfriends waiting for him!  Talk about a little flirt…he hands out smiles and giggles AND hugs and kisses!  We actually have to stop the kids some days because I don’t want it getting out of hand. 

So, we finish up with neuro and race home so I can shower and get ready to go to the Chris Tomlin concert!  My friend, Kristie, had called me earlier that morning to say that her husband wasn’t going to be able to make it to the concert and asked if I would like to go.  Ummm, YEAH!  LOL! 

I drove down with my friends, Amy & Jimmie and then met Kristie at the front doors.  Amy went to Kenya with me and we have become very close friends.  Jimmie is a great friend to us as well.  We had a wonderful time!  It was so wonderful to see a whole coliseum of people gather together for an evening of praise and worship- especially with Good Friday the following day!  Israel Houghton & The New Breed opened the show and oh.my.gosh…what an amazing talent!  Christy Nockels also performed with during CT’s show.  WOW again!  The night was just FULL of amazing talent.  It was just a great evening all around surrounded by friends.

I came home and was still all jazzed, but I lost the momentum somewhere because in the middle of talking to Scott, I fell asleep. 

Wow, that was a much longer post than I had set out to do!  Congrats if you made it through!  =)

Neuro update

Well, I took Ethan to his neurology appointment on Thursday afternoon. We were there almost two hours. I was pleased with the doctor's bedside manner and how thorough she was.

Because of the possibility of Ethan having seizures, she has ordered a sleep deprived EEG to see if there are any misfirings going on in his brain, and an MRA to rule out Moyamoya disease. If the EEG is clear, then we will likely do an inpatient stay in the epilepsy unit at the hospital so we would press a button if Ethan has an "episode" and then the report from the EEG will line up with any seizure activity (if any).

The lesions on Ethan's brain could be from a number of things, one of which is chemo. There really isn't a way to tell where they came from. They are not a concern unless they continue to change, so I assume we will have routine MRI's annually? I forgot to ask.

Doctor did confirm that Ethan's cerebellum is smaller and has extra fluid. It appears to be a mega cisterna magna. This could be insignificant and it could also be Dandy Walker variant.

There were a couple of other concerns- the amount of hair on Ethan's arms and back, and his lack of muscle mass (even though he is VERY strong). She thinks that he may have a vitamin deficiency because of his feeding issues. We will cover that all with a different doctor though.

Overall, it was a good appointment. I didn't leave freaked out about anything. I look forward to trying to figure out what is going on with Ethan when he has these "episodes". I want to thank my friend, Leah, for being such a great support to me before and after the appointment! Leah's daughter was recently diagnosed with Complex Partial Seizures and her episodes are eerily similar to Ethan's. THANK YOU LEAH!

I will update when we have our EEG and MRA scheduled.

SSI

Yes, I feel like this right about now in regards to Social Security.

Every month, I have to supply our financial statements and paystubs to the local SSA office. I happily provide the information because, frankly, they provide Ethan's insurance. Once they have logged the important info, they send me back my papers and I then shred them.

SSA called a couple of weeks ago and REQUIRED requested that I send them the exact same info AGAIN from August 2008 to present. If they don't get said documents in 15 days, they will cut Ethan off. I believe that it is in the job description at SSA to talk to their clients like they are the scum of the earth.

NEWS FLASH: I did NOT ask for this. I did NOT purposefully make my child have an extra chromosome so I could milk the SSDI system. I would really appreciate it if they quit treating me like some welfare-loving, crack-addicted, knocked-up whore from the other side of the tracks.

The only reason that we have SSDI is because of Ethan's needs and my inability to have a "real" job because of those needs. Daycare's will not take Ethan. Why not? Because, he is an almost 8 year old child with Down syndrome, PDD-NOS, and Sensory Processing Disorder (SPD) who is not potty trained, nor walking without assistance, nor eating/drinking without assistance. That list does not fare well in the general daycare population.

Then, we have Ethan's private therapies that he needs and all of the specialists that he sees. Even our caseworker said to me, "You couldn't work if you wanted to". Yeah, no kidding.

We have been on the medicaid waiver (CAP-MR/DD) list for about 4 years now. I was told that we seem like we would be priority when a slot opens, but who knows. In the meantime, we get closer and closer to bankruptcy and possibly losing our house (no, we are not behind on our mortgage, but it is a possibility every month).

We are only allowed a certain amount of income before SSA would cut off Ethan. You would be shocked at the amount. Basically, I can't even get a part-time job because we would run the risk of going over and, frankly, the cost of gas to and from would not be worth it.

All of this stress is going to make me lose it. I am trying to do the best I can for Ethan and I am treated like dirt for it. It's just all so frustrating. This is not where we should be! We always had limited debt and now, we are about maxed out from living on credit way back when Ethan was in the hospital all of the time. The hospital has ruined my perfect credit. If I had balls, then the government would be holding them.

(*I am sorry for that rant. I did not intend on that! But, it feels better to be able to vent a little. Just ignore me. We'll be ok.*)

Neurology

FINALLY called me today to give me an appointment for Ethan!!! They had a cancellation on Thursday at 3pm. I will take it!!!

Threading

I had my face- yes, face- threaded today. Ok, the eyebrows didn't hurt that bad, but the lip and cheeks? OMG. Maybe there is a reason that God made me furry, because that was like taking an epilady to my face.

With that said, my face is as smooth as a baby bottom and I am noticing all of the imperfections that my blonde fuzz covered! LOL. I am not sure if I will keep up with the "Full Facial", but I would have my lip and eyebrows done again by threading. I hate the way waxing makes my skin feel weird for a day or so. I was red at first, but it was gone after an hour. Ah, the pain we go through to feel pretty...

Mariposa Tourism

If you are planning a visit to Yosemite National Park this summer (or any other time), be sure to go through Mariposa- my beautiful hometown that I miss so much. The town thrives on tourism to the Park. I always think, in the back of my mind, that I will one day return home to Mariposa.

Yummy.

Today is a REALLY nice day! The sun is shining, the wind is blowing, the sounds of lawnmowers are all around me...FINALLY.

There is a kite festival-type thing going on down at Bethabara Park, so we took a picnic lunch down there. The wind is perfect for kite flying. I wish that we had ours out of the attic to take, but alas, we did not. Oh well.

While sitting on the grass admiring all of the different kite's, Ethan decides that he needs a little bit of green in his diet, so he begins to eat the grass. I should say attempt to eat the grass because we kept wiping it off of his hands before he could eat it. His determination was wild. It was like it was his new favorite food. *eye roll* Ugh...I can't get this kid to eat a cheerio, but he'll eat grass. What to do?

Bold, but oh so necessary

The small print reads:

"Most people who would never knowingly use disparaging terms don't see a problem with saying "retard". This must change. It's just as hateful as any other slur. And, for millions of people with intellectual disabilities, their families and friends, it hurts just as much. Please, don’t use the R word.”

Hats off to Special Olympics for releasing such a bold campaign. I think that many would have shied away from such a controversial ad. They put in print what many parents, families, and friends have been saying for a long time.

This is not about limiting free speech, this is about respect and dignity for all. And, just because you know someone who has a disability, does not make it ok for you to use the word, just like it is NOT ok for me to use the "N" word just because I know someone who is African-American.

IN HONOR OF

One of my besties, Cindy- or as she is known around here, Cinders, let me know that her cousin, Niki, is training with the Leukemia & Lymphoma Society's Team in Training to raise money for blood cancer research! Niki has a fundraising page and she mentions Ethan among the people that she is running "IN HONOR OF". It means so much to me that someone who has never met Ethan would train in his honor.

As most of you know, Ethan is in remission from Acute Lymphoblastic Leukemia (ALL). His "cure rate" is 80%. 80% is NOT 100%!!! Research still needs to be done in order to get that number to 100%, and that takes $$$$$. We do not let the fear of relapse consume us, but it is always in the back of our mind everytime an unexplained fever pops or bruise pops up.

I know that times are hard financially for many people these days, but if you feel led to donate to such an amazing organization, please support Niki here. Any amount helps! Thank you!!!

Movin' on UP!

Yesterday was Ethan's neurosurgery follow-up at Duke. His doctor is very pleased with Ethan's progress and doesn't need to see him for SIX months! That's excellent news!

Why do I have a picture of a growth chart (Uppercase Living, btw)??? Because my son- the same son who has not grown in close to TWO years- GREW AN INCH!!!!! After being "stuck" at 40 1/2 inches for close to two years, he is now 41 1/2 inches and still holding steady at 37 pounds. I was so excited in the nurses station! I started jumping with excitement! He will get to ride the big boy rides some day!!! LOL!

After the appointment, we headed over to the actual Duke University campus so we could go to the campus store and buy my friend, Carmen, some Duke gear. She lives closer to the West Coast, but loves Duke! That store was like the Duke mecca! A little overwhelming...I think that half of the store was laughing at me while I strolled through while having Carmen on the phone asking her if she wanted this or that...I hope to get the package together here in a bit for her. Carmen, I hope that you love your new Duke wear!

So I don't forget later...