Wednesday, April 20, 2011

Untitled Cancer Poem

The world keeps moving forward

as time stands still for me,

I am the kid with Cancer,

locked in battle to be free.

For all us kids on chemo

...our lives are put on hold,

As we fight to stay alive,

our chances good were told.

Our attitude is courage

we live this life each day,

Just waiting for tomorrow,

praying cancer goes away
 Walking on the edge of life

We’re never looking down,

United here in front of you,

until a cure is found.
I dedicate this post to Keegan and all the brave boys & girls fighting the good fight!

What's New Wednesday

Wow, what a difference a week makes! The weeks are passing more and more quickly now that the sun is shinning and we are able to get out and walk once a day! Keegan has changed quite a bit in just this short week that we have had! I am gonna get right to it then, no further delays!

  • This week was Student J's last week with Kee. Keegan really seemed to warm up to him and they worked well together. Student J is going to go on to be a wonderful PT I just know it!
  • Since Kee's collarbone is almost completely healed he is trolling around the living room much more. In fact the other day he went from the couch to the front door back to the couch doing his little arm crawl/frog leg thing.
  • Keegan is moving his tongue a lot more, Mrs. T is very happy with this! She bragged about it to our OT Mrs. K!
New Things:
  • Sooooo, this is one of the things I am most excited about. On Sunday I just put Keegan down for his afternoon nap. He fussed a little and when I went to check in on him because he got quiet I walked in the room to find him sitting up in his crib. I layed him down when I put him in there for nap. My big boy when from laying completely flat on his back to sitting up all by himself!!! I was soooo happy/flabbergasted that I just started to laugh! So this obviously meant we had to move the mattress from the infant setting down a notch or two (not sure what Ry decided).
  • I think we have come to realization that Keegan hates baby food. I probably would too! So my moms suggestion was to get canned ravioli or something and puree it since he is not cleared for solids yet by speech therapy. When I went grocery shopping this past weekend I picked up several different types and let me tell you I think he is in LOVE. He opens his mouth up wider than I have ever seen and I find that we are not sitting at the table for half and hour to forty-five minutes trying to feed him! I am so happy we tried this! Thanks mom, you can say I told ya so!
  • Keegan has always liked books. It wasn't until very recently that he REALLY likes books! I can now recite in full the board book version of  Oh the Thinks You Can Think and Ten in the Bed-by heart! I am sooo excited for his love of books but variety is the spice of life :) Ha! We have a ton of books from my teaching years that we can finally take advantage of!
  • Doing well health wise. I ask for continued prayers as we get closer and closer to his MRI and blood draw on May 12th. I am still worrying about it like its no body's business but I think I always will.
  • I really like what Lisa G commented with on my last Whats New Wednesday post:
Ever heard the expression 'don't take my grief away from me'? - i think anniversaries bring up things that didn't get processed all the way because you have to put them away for a while to get through the day - so let it be - feel it w/o guilt... and then you can move on when you're ready

The Family:
  • Well its official I am now selling and taking orders for custom wreaths and some home decor items. While I am worried about this new venture I think  I know that I will be great at it and hope to have lots and lots of clients once I get all my social media ducks in a row.
  • We have family pics on Saturday. I am very excited to be working with the fabulous Jessi Briner of Bee Elle Photography once again. She did our family pictures back in August and I have gotten so many compliments on them. I will let a little secret of our pics out, we are all wearing something the same just in different colors-can you guess ?
  • I went semi sorta dumpster diving with my mom and sister. I have been wanting a 5 or 6 panel door for months. I check antique stores, craigslist and free cycle religiously looking for one but have been unsuccessful in my search. As I was coming home from the grocery story the other night I noticed in one of the alleys that run through our neighborhood had a door propped out behind their garage. After dinner I coaxed my mom and sister to go with me. I snatched it up with their help and have started to strip the old (probably lead ridden) paint off of it. I am turning it into a headboard for Ry and I's bedroom AND I think I am already sold our bed on craigslist for a little extra money!
  • Our garden is planted! We managed to plant 8 tomato plants, 1 squash, 6 green pepper plants, a few lettuce seeds, 4 bean plants and 2 cucumber. I am hopeful that we will have tons of good homegrown veggies to enjoy this summer!
  • Oh and I need someone to make a logo for my wreath business, do you know anyone that is cheap?


Friday, April 15, 2011

Anniversary and kinda sorta What's new Wednesday (late)

I am not gonna lie, this has been a rough week to say the least and I apologize. I know the ladies over at ICI/PCI were looking forward to an update on Wednesday as probably were some of the my other readers but I honestly just didn't have it in me.
Today is the one year anniversary of Keegan's emergency shunt surgery (the first of many surgeries). Why such a big deal you may wonder? Well, this is the surgery that set the next month into motion with projectile vomiting, silent seizures and ultimately a life flight trip that saved his young life. The Shunt Story can be found HERE . So this past week has been rather hard never mind today and to top it off it is a yucky ucky day here in Evansville.
I think the next month will be difficult and just ask my family, friends and loved one to bear with me. A year ago our life starting spinning out of control and nothing has been the same since. A year ago Dr. Ackerman went into my sons brain for the first of three times. A year ago all we had to worry about was hydrocephalus which seemed HUGE at the time.
While I know I should be looking forward to the future and not at our past (why should we dwell on that stuff) it has changed me, it has changed Ry and how my whole family (extended included) views life and love. It has changed the simple mundane things into being accomplishments with everyday holding something new, exciting and extraordinary!
I have shed lots of  tears this week, been pretty stressed out and someone I don't even recognize! But I handle stress in a weird way. I have kept up on my medicine and will continue to do so until after Keegan's MRI on May 12th. I have gotten on the treadmill EVERYDAY and done 3 miles. It helps me zone and forget about life for a little while.

So anyway I bet you want some updates.....

  • PT is going well. He continues to want to stand. He hasn't quite got the hang of the leg moving to walk thing but I don't think it will be long.
  • This week while student J and Mrs. P were working on crawling he started to pick his hands up on his own and try to move forward. This is HUGE since all he has been doing lately is army crawling-we will take it!
  • During OT Mrs K is working on some oral motor skills. He likes to tongue his left cheek but does not cross mid line to the right with his tongue. So our goal is to get Mr. Tongue moving more to the right side. She accomplished that a handful of times this week in OT with some yogurt melts.
  • We have speech therapy today so shall see what we can accomplish. I did invest in these beauties. Keegan doesn't drink out of a sippy or a straw type sippy cup. So we tried one of THESE in speech a couple of weeks ago and he did VERY well. They are made so the child doesn't have to tilt their head back to drink out of the cup. Great invention hugh!!! I am excited to start using them!
New Things:
  • Keegan tried Biscuits and Gravy for the first time last weekend. Uncle Bret was in town and daddy made a nice breakfast on Saturday. He pureed up some biscuits and gravy and Ry said he couldn't keep enough of it coming! Keegan loved it!
  • This isn't really new but I have been taking Kee for a walk everyday when its nice out. He enjoys the new scenery and I enjoy the exercise! Eventually I would like to be able to bring our Dog Dogs with us!
  • Had my interview for Keegan's story in the Riley Messenger. Even the journalist who is writing the story is surprised by what a miracle our little boy is-watch out for a link to the Riley Messenger that Keegan will be featured in!
  • Keegan got his second hair cut ever! If you have been following us for awhile you might remember THIS post, Keegan's first hair cut! Then we lost all the hair due to chemo and since it is all grown back (overgrown if you ask me) We needed a trimy trim! Michele, my hairdresser, came to the house and did it. It went oh so smooth, I don't even think Keegan knew he was getting his hair cut!
  • Nothing really new on the health front, he still has some allergy issues but all we are asking for right now is a clean scan on May 12th and the blood work to show we can slowly come off isolation.
The Family:
  • I entered my first craft fair yesterday. I submitted the paperwork and the cash to reserve my booth. No turning back I am in the crafting business. I have started the blog to go along with it but don't have a logo yet so I am not sharing till all is said and done!
  • Ry's not working as many hours which is nice. He has gotten to go out on his motorcycle more with the nicer weather  and is enjoying every minute of it!
  • Our vegetable garden is being constructed his weekend, the starters are overgrowing their jars and NEED open space.
A post of pics and video to follow!


Thursday, April 7, 2011

What's New Wednesday!

Its been 2 weeks since my last installment, I apologize for that. Like I told you previously my computer malfunctioned and we had to go out and get me and new used one. I am still getting used to it, my new computer has many more functions than my old ones did, I haven't even explored those yet, just trying to learn the new windows platform-ha!

I was asked what I am studying in school. For those of you that don't know (not that this blog is about me) but I graduated in 2006 from USI with a Bachelor's Degree in Elementary Education with an Endorsement for Kindergarten. Obviously I don't teach but after I graduated I did until I was in a pretty serious car accident the same fall. After that I went in insurance because I was very interested in how it worked. In 2009 I obtained my State of Indiana Insurance license but got canned from that job when Keegan got sick. So now I am a 100 % stay at home mom working for a "degree" in medical transcription editing. I signed up with Career Steps last September and am still working toward the degree. I will admit most days I would DEFINITELY be doing something else, but when I think about it I know that once I obtain this certificate or whatever it will ease some of the financial stress I am sure we will face when my mom and my sister move out.

So onto Keegan, because well blabbing about me just isn't as fun. 

  • Keegan is tolerating PT more and more. I think he is really warming up to Jordan (our PT's student) and actually was laughing with his during this week session.
  • He LOVES to stand on his own, granted you have to be there supporting his hips but he just loves it.
  • When he is on his belly he is occasionally doing a froggy motion or hiking his little booty up in the air. He is THISCLOSE to actually crawling and not pulling himself along.
  • It seems on the weeks where he has a good week for PT it is a BAD week for OT the opposite for another week.
  • OT has starting to work with some of his oral problems and suggested some things that I can be doing every day during breakfast, lunch and dinner to help. For instance putting food on the left hand side of the crook of his mouth. You see he doesn't like to move his tongue laterally at all. He will move it out a little and obviously back but he refuses to go side to side. While that has changed a little bit lately (he is going to the left and bites his tongue when he is concentrating on the left side) he doesn't do it often enough or enough period to clean out food after he is done. So we are diligently trying to work on this.
  • Speech Therapy comes every other week so we have seen her once since the last updated. He is tolerating Mrs. T more and more and really enjoys some of the oral stimulating toys she brings to play with.

New Things:
  • Kee has started to make more sounds. He has added Nom to his vocabulary. I have yet to find out what it really means because what I thought it meant (more) is not the case because he has done it in situations where more didn't more to come on that front.
  • He is cutting more teeth poor buddy. So right now intermittent Tylenol it is.
  • I just found out, literally like 30 minutes ago that Keegan and our story will be featured in the an upcoming issue of the Riley Messenger. What is the Riley Messenger? You can find an online version HERE . This is pretty exciting for us because we have tried and tried and tried to get our story out to the media because of EVERYTHING that his story encompasses but no one wanted it....except our friends at the Riley Foundation. THANK YOU!
  • I think Kee is still having some allergy problems. He sounds all junky in his sinuses and throat. You just want to teach him how to clear his throat!
  • His Rash on his chest comes and goes, right now its hanging out for a little while..
  • Hopefully only another month or so on isolation then we can start venturing out in the world meeting new friends and seeing new places.

The Family:
  • Uncle Bret is visiting us this weekend from up north. The first thing Keegan did when he saw Bret was start laughing, the last time he saw Bret was his 1st Birthday back in September! We are glad you are here Uncle Bret!
  • I am starting my own wreath making business and will have that blog up and running soon where you can buy one of kind wreaths/decorations to hang on your front door at VERY reasonable prices!
  • Daddy is working less overtime which is good for EVERYONE, last week he logged 69 hours! I felt like a single parent (even though mom and my sister were around).
  • I got some strawberry plants to add to our vegetable garden yesterday. I am excited to get them planted and growing.
Well that is all I think I have for now, I do have a video I need to post. Hope everyone is having a blessed day and week, I will update again very soon!

Sunday, April 3, 2011

Everythings Okay

I just wanted to take a brief moment to tell everyone we are doing okay! My laptop took a crap a week ago so we had to find me a replacement. While the laptop I had was free thanks to my bestest friend forever and ever Aimee, she finally said farewell and sits on the window seat waiting to be taken in and sold for parts!

I did get a new (used) laptop from a local computer place in town. So far so good, still getting use to it and its functionality. I was gonna put it off and wait until I got a job transcribing BUT I realized I had to finish my school work somehow and that would require a computer. I am also starting a wreath making business. I have wanted to start crafting for awhile and finally got up the guts to do something about it. So I needing a computer to get that off the ground as well.

So anyway, I will be around this Wednesday ::promise:: for What's happening on Wednesday-Kee is doing well although a little too crabby for my liking today...but we are well....See ya'll soon!