So, I am driving Bubs to school this morning when the following commercial comes on the radio...it went a little like this:
If you have more than 20 pounds you want to lose and are not enrolled in any other weight loss program, you qualify to be part of our FREE weight loss trial. Weight loss is guaranteed or else you do not pay for your trial.Huh? Why would you pay for a free trial in the first place?
(For those who don't know what CHOP is, it is the Children's Hospital of Philadelphia. I have been working on getting Ethan into the intensive feeding program since before summer but insurance keeps denying for us to go since it is out of state.)
I got the call on Monday. I could tell what was going to be said. Denied. Again.
Ok, so for what this time? They supposedly don't pay for out-of-state claims for non-emergent services or for services that are offered in-state. That basically means that over the past 2 1/2 months, the reviewers were picking their noses and daydreaming into space because my referrals CLEARLY state that the services that Ethan needs are not offered in North Carolina!!!! Geesh people. Doomosses.
Now, on to the appeal process. I have to wait for the formal denial to come in the mail, but yeah- I have to call their bluff and appeal. It just really, really, really sucks that I have to go through all of this to get a service for Ethan that could very well help him stay safe when it comes to eating or manipulating objects in his mouth.
I'm not a Mama Bear for nothing y'all....onward and forward!
For the past few years, we have been, oh- bah humbuggish. We have not been in a prime state of economic means- from Ethan's leukemia to my lost job, and now to Scott's lost job. As each year passes, it becomes more and more painful to not be able to be giving to others as others give to us. I know that if we were the givers, we would not expect anything in return because it is just something we enjoy- GIVING TO OTHERS.
Our Christmas tree has not been put up in a few years mostly because we have nothing to put under it. We can also claim that Ethan would "likely" pull all of the ornaments off or just plain terrorize the tree, but honestly it's the absence of gifts. It pains me to not have anything for my Bubs under a tree for him. I hid behind the excuse that he likely won't remember this time anyway because of his cognitive age. Also, Ethan has SO many toys that he doesn't even play with. The age range of toys that may be appropriate are hard to look at (selfishly) because they may be appropriate for a 12 month old- heck, even a six month old depending on the skill. So, being as that we don't really have any money to spend on Christmas anyway we didn't "waste" our time or money with buying toys that just end up in the attic anyway. All of these excuses to simply not put up a tree and be reminded of what you can't give.
But, what can we give? We can give tradition.
I did not grow up with a Christmas tradition except going to my Grandparents house for Christmas dinner and presents- one of which was ALWAYS a box of See's Assorted Box with the yummy lollipops and gummies. I guess this is why I haven't put so much into a Christmas tradition. That, and we are celebrating Christ's birth and not some secular traditions. Well, I think that you can have both. Even though many are not celebrating Christmas to celebrate Christ, you really are. To give is to love and God gave the ultimate for us because He loves us.
That was a lot of background blah, blah, blah to get to the point. I was NOT going to put up a tree again this year- much to the disapproval of a very vocal friend (love ya!)- for the same reasons that I mentioned above. Then, I started to change my mind. I wanted to have at least tradition in pictures for Ethan. So, I was mentally preparing myself for putting up the Christmas tree. Then, I got a call...
Trish from our church called to see if we would like a Christmas tree. ??? Well, there is a fundraiser for Brenner Children's Hospital every year called the Festival of Trees. It is one of the biggest fundraisers for the hospital. One of our church members sponsors a tree every year and wanted to donate it back to the church. Well, our family was chosen to receive the tree. We had no idea what it would look like, we were just so humbled that we were thought of for this amazing gift! It ended up being a beautiful gift back to Ethan for all of the time he spent at Brenner's during his leukemia treatment and beyond.
Rebecca has worked feverishly on our new blog look! I ended up having more ideas than I thought and she was awesome through it all!!! I ♥ it! Take a look at the header and see if you can tell me some of the extra's that were added! ☺
The Faulkner Woodworks tab is still being worked on- stay tuned for that! And, it will take me just a bit to get the blogroll going. Let me know if you would like to be added!
We also have a new button!!! It is on the right sidebar- be sure to grab it! SO CUTE!!!
THANK YOU, REBECCA!!!
Since Ethan's tethered spinal cord release surgery. Even though the doctor assured me that the surgery should be a fairly simple one, the fact that my baby's back was being cut open and his SPINAL CORD was going to be released made me beyond nervous. I was elated when I was able to post this. What a difference a year has made with Ethan's walking! He still gets stubborn, but it's not because he can't do it, it's because he WON'T do it. Sounds pretty typical.
We are SO proud of Ethan's achievements post surgery!!!
Scott is clearing things out of the garage and he has demanded that I get rid of some stuff (rightfully so). Some of the things that I thought someone may like are:
Mary Kay bag (so nice, holds samples and such)...will post a pic later
Beauticontrol Bag...this one is so nice too, I think you can carry supplies in it or even a laptop. Don't quote me on that one yet....pic later too
Duffel bags
Child swing just like this one, except in red. For 3months- 3 years
I surely have MORE, but that's all I can think of off the top of my head. If you know of anyone that would like any said items, let me know!
Just in case you haven't figured out what EMHE stands for...
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.
My big highlight of the day? Ed winked at me. For those who don't know who Ed is, this is he! ------------------------------>>>>
, I won't be able to make it. Here's to hoping! ☺
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?
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.
