Wednesday, March 31, 2010

Wordless Wednesday: A Few Favorites from the First Baseball Game

Despite a few drops on the way to the game, the first game of the Spring Season of Miracle League was not rained out and Noah got to play. Of course he was escorted by his favorite buddy, Granddad! 


Posing before the game - the only time I could get him to keep the hat on!

Noah and Granddad in the dugout discussing strategy.
 Almost their turn - Noah and Granddad on deck
Batter Up! Noah and Granddad batting. 

Running to home plate - SAFE! 
Giving the coach a "high five." 

It was a fun night!


Sunday, March 28, 2010

Quote of the Week: She's Up

"I want to be the kind of woman that each day when my feet hit the floor the devil says, "Oh crap, she's up."
 ~ author unknown

Thursday, March 25, 2010

Moving Forward with Noah's Surgery

We met with another surgeon today - a pediatric surgeon. He agreed with the other surgeons that Noah definitely needs the surgery and he also felt that there could be pulmonary problems (like his lungs not having enough room to breathe down the line) which has always been a huge worry of mine.  We liked him, felt comfortable with him, and got a good vibe from him (and it didn't hurt that he had on a Scooby Doo tie - kidding!) so we decided to move forward with the surgery. We don't have a date yet. It will be sometime this summer hopefully.There's still some differences between what this surgeon says versus the other surgeon and I'm not real sure how I feel about that. I know that each doctor is probably going to do things a bit differently based on different training, schooling, and experiences and I just have to trust that God's hands will be guiding this surgery.

I feel relieved that things are finally moving forward but I feel uneasy at the same time if that makes any sense. My baby is going to have "brutal surgery!" It's scary! We are definitely going to need all the support, thoughts, and prayers we can get from our family, friends, and prayer warriors as we get closer to the surgery!!

Miracle League Starts Tonight

The Spring season of Miracle League starts tonight pending that there isn't rain of course. (It always seems to rain out the first game of the spring season!)  Noah's pretty excited about it. We've been counting down the days till the first game for a bit now. Granddad will be Noah's permanent buddy again. He just plays better with Granddad as his buddy and wouldn't have it any other way. I'm excited too - I get to bring the big girl camera! I really haven't been able to give her a good test run since I got her.

New reader and wondering what Miracle League is? Read all about it here.

Tuesday, March 23, 2010

I Heart Faces: Angles Week

It's angles week at I Heart Faces. I love taking photos with angles. I'm often known to tilt my camera to the right or the left to give an image a more interesting look. You can take a plain Jane background and setting and make it more interesting by angling your camera. I had a hard time choosing a photo for this week but ultimately chose this angled photo of Angel Abby. 



I'm shooting on the ground below the bench so it looks like Abby's about to fly off the bench. 

To see more angled photos check out all the links on I Heart Faces



Sunday, March 21, 2010

Quote of the Week: Creating Yourself

"Life isn't about finding yourself; it's about creating yourself." 
- Unknown 

Wednesday, March 17, 2010

Wordless Wednesday: Snuggle Time with Uncle Andy





That's Noah's Uncle Andy. He came home a few weekends ago and Noah was SO excited to see him and crawled over the the couch and demanded requested some snuggle time.



Tuesday, March 16, 2010

Gettin' Over it

Notice all the medicine there in that picture? That's a lot of freaking medicine isn't and that doesn't even include all the medicine Noah takes on a daily basis for seizures, behavior, and muscle control. You've probably noticed I have been super quiet for the past week and now that you have seen that picture with all that medicine you've probably guessed that we've had some sick peeps in our house. All of us actually but techincally I guess I should have said were because we are all getting over it. We're not all one hundred percent yet but we are definitely on the mend.

J brought the sickness home first a week ago coming down with strep throat and then two days later during the night Noah's fever spiked up and he was sick too. The next day I made a doctor's appoinment for Noah and he was diagnosed with H1N1. Since I was feeling a bit icky and coughing I was tested too and although my test came back negative the doctor went ahead and started me on meds too knowing that I'd probably come down with it while caring for Noah.

Its been a long week. I was trying to care for Noah and J at the same time while trying to take care of myself. The first three nights Noah had it his fever spiked up high every night getting as high as 102.8. With Noah having epilepsy high fever is always a concern because it could induce seizures so needless to say I am always a little stressed when Noah's fever spikes. I pretty much stayed up all night those nights taking his tempature every hour and then cat napped during the day.

He is feeling better now thankfully. We went ahead and sent him to school today. J is feeling a lot better too. And I think I hit the worst of it Sunday and yesterday so hopefully I'm on my way to recovery. I plan to try and rest and catch up on my missed sleep today and tomorrow and then we meet with a new pediatric surgeon about Noah's back surgery on Thursday.

Wednesday, March 10, 2010

Wordless Wednesday: Noah Loves You

The other night Noah was being very silly and kept signing (American Sign Language) "Noah loves you" to me over and over. As you'll see in the pictures below he doesn't use the popular "I love you sign" but instead signs each word.

Monday, March 8, 2010

Rainbow Fruit Snack/Desert

This is a cute healthy desert/snack my Mom and I made Sunday for desert. Isn't it great for this time of year with St. Patty's Day coming up. Although, I think it would be cute at any time of the year. I orginally saw a little blurb about it in a copy of Family Fun Magazine I was reading while waiting for Noah's name to be called at the doctor last week.


It's super simple to do. You just take different colored fruits of your choice (we used strawberries, oranges, pineapples, green grapes, and purple grapes) and form them color by color in an arch starting with your red fruit and working your way down. Then add some marshmellow clouds and gold coins (chocolates) that you find at the end of the rainbow and your done! When my Mom did this on Friday for a church event, she hollowed out an orange and put the gold coins in there. We didn't go to all that trouble today.


Cute, fun, healthy, and yummy!


(Linking up to the link parties listed in my sidebar.)

Sunday, March 7, 2010

Quote of the Week: Be Me

"All I can do is be me - whoever that is." 

~ Bob Dylan

(This quote kind of goes with my whole "I was made for this" revelation.)

Saturday, March 6, 2010

South Carolinians, Help the Disabled in our State

I'm writing today to ask my readers who are from South Carolina  to help my Noah and disabled children and adults like him. Currently in our state of South Carolina, when a child with moderate to severe developmental disabilities (In case you are curious, Noah's state diagnosis is moderate developmental disabilities.) becomes an adult there are a few options. They can go into a residential facility where they would receive all their care. They can go into a day program where they'd receive care (sort of similar to adult day care) or they can go into a day work type program where they receive care and then often do some type of very easy job such as sorting products or something similar to that. (This is a very basic explanation of the services and how they were explained to me recently. For the record, Noah’s IEP goals are working him towards the day work program.) 


The House, Ways, and Means Committee is proposing a 28% budget cut in the State budget for the South Carolina Department of Disabilities and Special Needs. These proposed budget cuts would take away these programs leaving nothing for the adults currently receiving services from these programs and nothing for Noah and children like him when they reach adulthood. Without these services many parents of adults and children with special needs would have no option as to how their children would be cared for during the day which means some of these parents would be unable to work. Also, these adults and children with be losing a healthy, stable, and safe environment that provides them with care, satisfaction, and stimulation. I know as a parent, it would be hard for me to personally provide Noah the type of experience obtained through a day program and that experience would be a total one eighty versus the experience he would have staying at home all day as an adult. Sure, I’d come up with some things for him to do but it wouldn’t be the same at all. 

Let’s break it down even more………
Some facts about what the proposed budget cuts mean:|

  • This equates to a $47 million dollar reduction. 
  • The Loss in Medicaid Funding will be over $110 million. 
  • 157 Million dollars worth of services will be cut. 
  • All services but residential services will be eliminated in the state. 
  • 25,700 individuals and families will lose services in the state.
  • 3,100 jobs will be lost throughout the state. 



The South Carolina Department of Disabilities and Special Needs has taken the largest cut of any state agency. The most vulnerable part of the state population is being asked to take a disproportionate amount of the cuts in the state.


As you can tell from reading those facts, these cuts will have a profound impact on services for individuals with developmental disabilities. So, I’m asking my fellow South Carolinians to please contact your legislator and let them know the determent these cuts will cause to the adults and children in the Special Needs community. 


Does the thought of calling up a legislator’s office intimidate you? Don’t worry – it did intimidate me initially as well. Check out this link to some tips for calling your legislator. 


So, how do you know who your Legislators are? Check out this link to find your Legislators using your zip code. 


So, please, take 5 minutes and make this call. You’ll be helping many!

Friday, March 5, 2010

You Were Made for This

I have been in a mood lately. I've been angry - not at anyone in life specifically but just at the situation in my life. I'm angry that Noah has to have this upcoming surgery. Kind of petty I guess because it is not anything that any of us can control but I still am just angry that he has to go through this. It's all made me moody lately and I have just been dreading what is about to come.

I had an "ah ha" moment earlier in the week. Once again, bedtime has become a huge battle for Noah and I. Once he finally gives in, I creep downstairs quietly, enjoy some tea, and try to decompress as I watch something I had DVRed earlier in the week. So, I was watching the girls night of American Idol. Lacey Brown was about to sing and they were running a little pre-recorded piece where she was talking about what she does before she sings and she said that she tells herself "I was made for this." She said her Mom has always told her,  "You were made for this."


It just sorta clicked then and there. I was made for this. No, being the Mom of a child with special needs isn't easy and it's not fun, but I really do think it was in His plan. He made me for this life, my life. He made me for this situation. He made me for Noah.

Immediately two verses were brought to mind, one of which is a long time favorite.


"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful." 







And the second verse brought to mind, one of my all time favorites:


"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11

So, while I might not be loving this upcoming chapter of my life, for some reason it's in His plans. He made me for this, he knows I will make it through it and be stronger on the other side. With Him I can do this. I can fulfill His plans because I was made for this. 


~


Edited to Add: Since writing this post, I have fully embraced "You were Made for This" as my mantra and even took it on as a photography project taking different photos in different settings with my mantra. Click here to see all the photos thus far.

Wednesday, March 3, 2010

Tuesday, March 2, 2010

The New Doctor

Yesterday we met with a different Doctor regarding Noah's Scoliosis and the surgery he needs. He would be able to do the surgery before December - he probably couldn't do it before May but May is good for me because that was the time line I had been thinking all along.

However, I do have some reservations about him. Some of his answers to my questions totally differed from the answers from the other Doctor. (Meaning the Dr. from Shriner's who has operated on Noah before and who specializes in this sort of thing.) For example, the Dr. at Shriner's had said that we couldn't pick Noah up under the armpits for a year and this new Dr. said a week or two when I asked him that question. I'm not sure why the huge difference of opinion and think it could stem from the Shriner's Dr. being a specialist in dealing with children with special needs and the new Dr. isn't.

Also, this new Dr. hasn't operated on a ton of children although he does all his pediatric surgeries with a pediatric surgeon in the practice. So, where things stand now is the new Dr. is going to consultant with the Shriner's Dr. and the pediatric surgeon and get back to us.