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.
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.
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!!! :)
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,
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. 
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.
