I've been meaning to share this for awhile now and am just now getting around to it.....
Noah wasn't the only one who got toys for Christmas. I got a Slice machine! For my un-crafty readers who are wondering what the heck a slice machine is - it's a die cut machine. Still confused? Basically it easily cuts shapes, letters, etc. You buy different themed cartridges (like Halloween, Christmas, baby stuff, kid stuff, sports, etc.) and then the machine cuts whatever you tell it too in a variety of sizes.
I researched various different machines similar to the Slice machine. The Cricut Expression (you may have seen their long infomercials on in the wee hours of the morning if you are having trouble sleeping) is probably one of the most popular but it's also HUGE. And for what I wanted the machine for, I ultimately decided that the Slice would be the best way to go for now. I love how small and portable it is! So I added it to my Christmas wish list and was a very lucky girl and received it. (Thanks Mom and Dad!!)
Here it is in all it's glory......
And some random shapes that I cut on Christmas night because I was just like a little kid on Christmas and dying to use it.
And here's the word "dream" I cut and adhered to this cute little notebook
And some hearts I cut.
(You'll see what the hearts become next week.)
Good times! I heart my Slice!
(And no, I wasn't compensated by Making Memories for this post - I just really do heart my Slice!)
MTV has a new show titled The Buried Life. I admit I don't watch MTV that much anymore (I think I'm getting too old for MTV! LOL) but I have been following Teen Mom because of the adoption angle. While watching Teen Mom I saw previews for The Buried Life and thought that it looked like a good show that I definitely wanted to check out so I set it up to DVR. (Gotta love technology.)
The premise of The Buried Life is based on one question: "What do you want to do before you die?" It chronicles four guys (Duncan, Ben, Dave, and Jonnie) who together made a list of 100 things they wanted to do before they die. They then travel around the United States in a huge purple bus they named Penelope (my puppy's middle name!) accomplishing and checking off items on their list. For every item they check off on their own list they ask a stranger the question and then try to help that person accomplish it.
As someone who has her own personal bucket list, I found the premise of the show intriguing. So far two episodes have aired. They haven't disappointed me. They are hilarious but touching all at the same time.
In the first episode they are trying to cross off number 6 on their list which is "attend a party at the Playboy mansion." Not something that is on my list but their pursuit of this was hilarious as two of the foursome hid in a giant cake for over 6 hours! Two of the foursome did accomplish the task and for these guys as long as one of the four follows through on the task they consider it done and check it off. Then their good deed was to help a stranger they met while near the Playboy Mansion who said he wanted to get the students at his school a new computer before he died. More hilarity ensued as the foursome raised enough money to buy a new computer for the school by doing street performances.
When they actually started this project four years ago they weren't affiliated with MTV. They just all felt something was "missing" from their lives and decided that this would be a fun and meaningful project to accomplish. They raised funds and took two weeks off from work and school and accomplished a hand full of items off the list in those two weeks and it all sort of snow balled from there eventually allowing them to cross off number 53 off their list - which was make a TV show.
And the guys end each episode telling viewers to be prepared because they might be in their home town next and you know what question they'll be asking. So let me ask you - what do you want to do before you die?
I took a little break from the computer this weekend. A thirty six hour one to be exact! It was a much needed break as my poor brain (and heart!) couldn't handle consuming much more information regarding Scolosis, back surgery, cerebral palsy, etc.
So, unintentionally at first, I didn't turn on the computer. It did get turned on eventually by J and Noah but I refrained from getting online. I did get on Facebook from my phone - you can't expect me to go totally cold turkey now can you?!?
After that break, I'm feeling re-freshed and ready to tackle life again.
I know I've been pretty quiet since my overwhelmed post that I wrote right after coming home from Noah's doctors appointment. My head is still swimming from all the information!! Over the past week, I've been reading, researching, and talking to other parents' whos children have the type of Scoliosis associated with Cerebral Palsy. I've also been praying, (lots and lots of praying!) soul searching, spending time with my family, and having a small meltdown or two a long the way.
Let me tell you, I was right, talking with other parents was definately the way to go. Albeit some of the information hasn't been positive and definately hasn't been easy to digest or what I wanted to hear, it was truthful information from a parents point of view. I need to know what we are walking into should we choose to move forward with the surgery and while Noah's doctor is full of knowledge, other parents who have lived it are able to give me a different type of knowledge.
So many of you have reached out to me via text messages, emails, cards, phone calls, etc - thank you to all of you for that. Even if I haven't yet had a chance to respond, every thought and prayer has been and is appreciated. It means a lot to us to feel your love and to know that so many people are praying and thinking of us.
I'm loving Noah's headphones that were a Christmas gift for a few different reasons.
1. He can watch and hear his videos (home movies taken with my digital camera that he watches over and over and over and over again) without me hearing my Mom sing Itsy Bitsy Spider a zillion times or hearing cheering at the Miracle League game.
2. I can have the TV on or be on the phone while he has the headphones on and he doesn't get distracted or fuss like he did before the headphones.
I'm feeling completely and utterly overwhelmed. Noah's previously mentioned Shriner's appointment was on Tuesday. Words like life expectancy, brutal surgery, risks, and Hoyer lift are all floating through my head.
I did learn a lot of things and have so much information in my little head. Some of what I write here is more for me than for you but you get the pleasure of reading it too.....
The doctor that we met with was a familiar doctor. Going in, I wasn't sure which doctor Noah would be assigned to but this was the doctor that performed Noah's heel cord and hip surgery in 2002 so I trust him and he's always very up front and honest.
Noah was given the official Scoliosis diagnosis. (Big duh to anyone who looks at his back and says he doesn't have it but you always need that official diagnosis.) Noah's curvature is the worst it can be - 96.3 degrees. I also learned that there is a type of Scoliosis that is associated with Cerebral Palsy and that type of Scoliosis is different from the "normal" type of Scoliosis. All of my research prior to this appointment, the risks associated with Scoliosis, and the little bit of information I had found about the surgery all dealt with the regular Scoliosis. The risks associated with moving forward with the surgery or not having the surgery are completely different when dealing with the Scoliosis associated with CP.
Children with CP are considered more medically fragile therefore, surgery is harder on their body and this surgery in the doctor's own words is a "brutal surgery" so we need to decide if moving forward with the surgery is worth the risks. In order to help us access that, we'll be meeting with an anthesologist at Shriner's next month to access Noah. The doctor also said that if Noah's life expectancy was not many more years he would not do the surgery due to the possibility of complications like a breathing tube and feeding tube permamently after surgery.
If Noah has the surgery, we could not pick him up under the armpits for a year. This would require a Hoyer lift. This is where things would get extremely complicated as there is almost no way a Hoyer lift would fit in our house as is and it definitely wouldn't fit in Noah's room. We also have stairs so I have no clue how we'd get him up the stairs. All of that will require some thinking, modifying, and planning but I'm trusting in God that if we do move forward with the surgery he will help us work all these smaller details out.
I know there is more we learned that I'm forgetting. Again, overwhelmed. I keep thinking of more and more questions so I've got a little notebook I always carry with me and I'm writing those down
In the meantime, we'll be praying (and we're asking family and friends to pray as well) for the strength and guidance to make this decision. As I've always done with Noah's diagnosis and problems in life, I'll be researching and reading as much as I can between now and then. I really want to find a parent who has a child with the type of Scoliosis associated with CP who has had the surgery and one who hasn't had the surgery and talk to them. This doctor is great but over the years I have learned that there are things that other parents can tell you and have experienced that doctors can't or don't tell you.
You know how much we love socks and since I haven't posted a socks photo in awhile so II thought these pictures of Noahie and I wearing new, matching socks that were a Christmas gift from a friend (Thanks Leigh!) was a fitting picture for this week's Wordless Wednesday!
I haven't been blogging much lately. I don't know why but I just haven't been in a blogging mood. Bear with me, I'm sure it will pass quickly. It usually does. I do have several things I'm working on though.
This picture is from Noah's camera. It's straight from the camera and un-edited. I think it's adorable. It's one of those self portraits where ya stick your arm as far as you can and snap the photo. It's also an early morning photo so we're in jammies and I have no make up on. I probably haven't even brushed my hair yet. Noahie loves it though because it came from HIS camera.
Noah's doctors' appointment about his back is tomorrow. It looks really bad and we have been waiting awhile for this appointment and while I'm nervous about the outcome I'm also relieved that the appointment is finally here. Noah hasn't had any back pain or complained of it at all until yesterday. Ironic (but a blessing at the same time I guess) that he hasn't had any pain until two days before the appointment. J went to pick him up and he cried out loudly in pain. Noah has a pretty high pain tolerance anyways so I know it must have been pretty bad for him to cry out the way he did. It breaks my heart to see him in pain and not be able to easily fix it.