Tuesday, December 28, 2010

Wow....

Sometimes my husband wows me. I mean really wows me. Like when I made a comment that I would love to have the back patio screened in and next thing I know he's built it from scratch with no real plans. And now I have a beautiful back patio screened in.

Amazing!

But those moments, as shocking and WOW as they are dont come close to the times when he teaches me things.

And as much as I hate to admit it and yes I do, He really does teach me some incredible things.

It was his book that changed my view of spina bifida more than anything thing else. You would think i wouldnt be surprised by something else he taught me. But I was.

Sitting in Sunday School class with teens again.

Not expecting anything to really truly HIT ME! And then he starts. It was the Sunday before Christmas so of course it was appropriate to talk about Mary the mother of Jesus. And of course I have spent my whole life hearing about Mary the mother of Jesus. But what he said and the view he came from rocked my happy little picture of a oddly glowing mary bent over a baby Jesus.
He talked about the PRICE mary paid to be the mother of Jesus. The fact that being pregnant before marriage made her a social outcast. The fact that her son, her baby was born to DIE. And she knew that. She knew that He was the Son of God. To give birth to a baby who was born to take away the sin's of the whole world. (I'm doing a horrible job of relaying his message) But the part that hit me was when Nate talked about Mary watching her son suffer. Mary watched Jesus die on the cross. She watched her firstborn son be mocked, be beat, be nailed to the cross. She watched as Jesus asked John to take care of her while He hung on the cross. Now think of watching YOUR CHILD go through what Jesus went through. Think about watching your child suffer the way that Jesus suffered, the way that He was mocked.
Now rewind...
When the angel stood in front of Mary and told her she would be the mother of Jesus. The mother of the son of God. Do you think Mary really would have signed on to that had she understood the suffering she would feel. The unbearable hurt and heartache that would be hers. What if she had known? What if she had understood? Had I been hurt I would have gone running the other direction.!! But Oh the amazing parts she would have missed out on. The joy and miracles she was able to witness. The incredible miracle of being Jesus' mother. She would have missed it.
Honestly, I had never thought about Mary that way. I never thought about Mary has a mother who paid a high price to be the mother of Jesus.
Then Nate talked about Toby. How maybe if we had understood what heartache we would feel to see our child suffer......If we had understood the fears, the pain and the sorrow...We probably would have run the other direction. But Oh again the amazing parts we would have missed out on. The joys we see. The miracles we witness as he walks through the house. The incredible miracle of being Toby's parents. We would have missed it.
So yes, Mary paid a high price being the mother of Jesus. It wasn't all glowing happiness in a manger. There was heartache, there was sorrow, but there was also amazing wonderful incredible experience.
I sat there with tears..trying not to break into the ugly cry. I heard a friend nearby crying also.
What a reminder for me.
What a wonderful amazing reminder. Yes, there is heartache, yes there is sorrow...But Oh....the Amazing parts. I wouldnt trade them for anything!

Sunday, November 21, 2010

GIVEAWAY TIME!!!!

Beautiful isnt it???

Don't you want one!!


So make sure you pop on over to http://www.spinabifidakids.blogspot.com/ and scroll down till you find the giveaway post . (only one or two down)



anyone can enter!! its not just for mommies of sb kids. its for ANYONE who likes pretty things.


Tuesday, November 2, 2010

amazement

So. Life never ceases to amaze me.

Never.

I am almost having a hard time searching for words to even begin this post. I'm actually going to write half of it over at The Journey website and half here. The personal half here and the other there.

So now I have to figure out what to write here and what to write there.

HA!

Okay, well yesturday afternoon I was surfing the web during "nap time" (i use that term very lightly now) And I came across a sort of graph of children's Spina Bifida Levels and what there physical outcome usually is. It went something similiar to this...Not exactly this as I'm going from memory and this is just an example.
L1- walk with arm crutches. full time wheelchair user later on in life
So I scroll through to find Toby's level and BOOOM!! Full time wheelchair user later in life.
This is what happened in my little heart and mind.
My happy picture I have had in my mind of Toby. My picture of him walking around with arm crutches as a teenager through the mall, opening doors for people, laughing and hanging out came crumbling down around me and getting smashed by a picture of Toby as a teenager in a wheelchair. More thoughts and past advice crowded in of Doctor's and therapist saying he would walk for a while and then use a chair. We heard that when we were pregnant, We heard that with our first therapist, We've heard that in our clinic. But it was like the past few months of how amazing he is doing as made me forget those things.
The past few months I've pictured Toby walking. that's it. Just walking. Ive picture steps in my house. Ive picture normal doorways. I've pictured Toby walking.
That afternoon I cried. I cried again that night as I tried to explain it to Nate. And I cried again today trying to explain to my friend Larie.
No way can my mind wrap around Toby back tracking. No way can my mind take my Toby who has worked so hard and seemingly go backwards.
So today I'm sitting in my car after dropping Toby off at the door for therapy talking to Larie on the phone and trying to make sure my mascara doesnt run all over the place and poor Selina (toby's pt) think I have lost my mind.
I watch her work and work and work with him and about 40 minutes into the session I can hardly take it any more. ( I know it sounds overdramatic but imagine how amazingly overwhelmed im feeling) I start to ask her about levels. I start to ask her about how he's functioning. And then I ask her.....What are we looking at long term? She kind of looks confused at me. So then with a ridiculously shaky voice I explain what I read and what I've heard. She looks at me right in the eyes and says this..

"Kari, Toby should walk till he's 60. No really. Maybe till he's 80. He might need a cane. He might need some ankle braces. But Toby's going to walk. Unless he decides and you decide that he shouldnt. Toby will walk."

And there goes my picture of him in his chair. Of my widened doorways, of my house with no steps. And here comes Toby. Walking up to the door step maybe with a hobble. maybe with some arm crutches. But there's my teenage boy picture STANDING there.

So does life amaze me. Yes life amazes me. Does life feel like a rollercoaster?? You better believe it.

But the best part of all this is. I can see God working. I see God moving and I see God directing. If we had never lost Todd (our old therapist that was amazing) we would have never gotten Selina. If we would have never gotten Selina we wouldnt be where we were today. If I had never seen that chart I would have never asked her about it. If I had never asked her about it I wouldnt know the amazing hope that I know tonight.
Pretty awesome rollercoaster, huh?
Make sure you check out my other post over at the Journey to finish up this story. : )


i always set out tobys stuff to get him ready in the moring. I was shocked when I walked in and realized there was no back brace, no twister cables and just these tiny little afos. pretty amazing, i had to take a picture.

Wednesday, October 20, 2010

Today I prayed, and I will pray again tomorrow

Today I prayed.



And today it shocked me how little I pray for the babies who have Spina Bifida. The mommy's who believe they have the right to decide if their child lives or not.



Sometimes its easy to stay in my happy little bubble, assuming that no one would ever think that these children should not have a chance at life. An amazing life might I add.



Today helped me realize how much I should be praying, not just once a year or once when someone really shakes me out of my little bubble. But continually and constantly. Knowing that God listens.



There are so many reminders in my life of how amazing these children are. How completely 100% worth it they are!



Ive gotten over 70 orders for necklaces and bracelets from my other blog and I've loved it. Its so amazing to sit there and look at all these little circles with children's name on them. Children's whose parents chose life. Its been amazing to look at all the words. Brave, perspective, fearless, and can. Realize how much meaning those words have!



100% worth it!



This week if your friends with me on facebook You know that ive been working on a painting for the Kinetic Kids (sports programed for handicapped children) silent auction. A picture that really does mean so much to me because if though some might look at Tobys arm crutches as a sign of being DISabled. I see them as a sign of being ABLE! I sign of how far weve come and how hard weve worked.







100% worth it!!



And so I will keep praying even after today is done. I will keep praying that these mommies, daddies, doctors, grandmas, brothers and sisters will realize how 100% worth it these children are!!

Friday, October 8, 2010

A little idea to a really big deal




So as we all know from facebook, blogs, babycenter. The Spina Bifida Awareness Shirts are a hit. A much bigger hit than I ever even imagined. As of right now we are already over 200 shirts!! I stay awake at night now imagining angry customers who got the wrong sizes, boxes surronding me and none of the shirts fitting in them!! Its great! I had no idea how out of hand this was going to get. Not to mention people seeing the necklaces and bracelets and ordering them. Its fantastic, but slightly overwhelming!




I love what Karen over at Carson's Corner said about spina bifida awareness


I also wanted to mention that October is spina bifida awareness month. Spina Bifida is something that we have learned about through experience. However, I feel that people need to know what it is through influence as well. I think about all the precious babies who are not given the chance to life because there is a lack of proper information or a lack of proper counsel. How sad it is that spina bifida is considered a severe disabling birth defect that effects the child's quality of life. Even worse is that many women are counseled by doctors that the very best thing they can do is choose abortion. We must do our part to spread awareness, and change the opinion of what spina bifida is. Look how cute and happy and amazing a child with spina bifida can be. Look at the quality of life they themselves have and the blessing that they are to those around them. They are so strong, and teach us so many things about life and love.A small way that you can help is by purchasing a Spina Bifida awareness t-shirt. The cost is only $13 and you can "wear your awareness". Perhaps you will meet someone and be able to share the testimony and blessing of the one who you love with spina bifida.Please go to http://urbanupcycling.blogspot.com/2010/10/redefine-spina-bifidia.html and place your order today. They will only be available till October 12.




What a great reason!! I love it!




Anyway, I've never been so excited about a shirt in all my life. But I really am. Leigh Gibbs husband, Andy did such a fanstic job of capturing how we all feel about Spina Bifida. It's such an amazingly honest design.




So anyway, this has been my life since this past wednesday and will probably continue to be until this next wednesday.


Monday, September 27, 2010

a moment of triumph

Im having a rough day. One of those nothing goes quite according to plan cause ive been at appointments with Toby. Trying to homeschool, now juggle 6 therapy sessions a week and any other extra appointments are taking a toll on my emotional and mental stability.!!
So instead of sharing all my woes with you and sitting and feeling very very sorry for myself. I'm going to share a happy moment.
I hope that people from my church family will especially enjoy this.

Since our Pastor has been doing the "kids choir" every Sunday morning Ive enjoyed and not enjoyed it. Of course I love seeing all the kids up there and I love watching Gracie so proudly march up there to sing and all of my friends kids. But there was always someone missing. And that someone sat right next to me, (well sometimes, sometimes he prefered the smyer family) : ) Toby would never go up. The first time he tried he started making it that way and I honestly saw the shock of stairs and kids running hit him. It made my heart hurt so bad for him. He just broke down crying right there and turned his little walker around and sat down with me. That was it for him. He wasnt going to try it again. Every Sunday Pastor would announce the kids to come up, I would lean over and ask, "Toby do you want to sing?" He would say, "NO" and I wouldnt push it. I just left it alone even though I wanted to be the pushy, you will get over this fear right now, type of mommy. So every Sunday even though I loved it, I hated it because it always made it so obvious how hard things were for him. Things that werer so simple for the other kids and how he saw the difference.
Well about 3 or 4 weeks ago. I leaned over and asked. and He said, "Okay. I'll try it." I about died right there in my seat. I about had a panic attack. Luckily Jessica (toby's best teenager as he calls her) has always said that when he's ready she would take him. She was sitting 2 rows ahead. I got her attention and off she went with him. I love that she knew just what to do. She didnt hold him the whole time. She held him till he got comfortable and then put him down and held his hands so he could stand right with all the other kids. It was a moment of triumph. Such a small thing but it was amazing.Only a few people knew how much that moment meant. And every week since he's gone up without question. The last 2 weeks he's gone with his walker with different people helping every week.

There are so many aspects of this story I love. And even though its kind of a bummer day. I cant really help but have a sense of happiness when I think about it.
hopefully I'll post a picture soon

Tuesday, September 7, 2010

survived the week

We survived our week!!!

We ended up having appointments Monday thru Friday for Toby. Poor guy, but nothing that a trip to mcdonalds couldnt cure.

We will have more coming soon.

Thats life though.

Some results. We got molded for a back brace for Toby's new diagnosis of scoliosis. (bummer) He is going to start receiving speech therapy (they put him at the level of speech for half his age..crazy bummer) And Ocupational therapy.. (wasnt near as bad as speech but is still needed) which puts us at a grand total of 6 therapiest a week. Honestly im hoping it takes insurance a while to approve this one. : )

On a positive note I had the nicest therapist stop me today during PT and take the time to tell me about all these programs. (most I had heard of) But not only tell me, print out paper work, write down phone numbers, print off webpages. EVERYTHING!! I was so thankful.

Toby and I were out in the most horrible rain ever for therapy today. We have to walk over a block to our car from therapy. It didnt hit me till we got outside that I would be carrying a 4 year old, papers from therapist, arm crutches and trying to balance an umbrella. Well of course our umbrella blew inside out 4 times. a car drove by and splashed me. the umbrella got blown out of my hand back into the street we had just crossed (which then we had to recross to save the umbrella) in all the hussle I put Toby into Milo's baby car seat (which he immediately got upset about, had to get back out in the rain and switch him) 2 cars pulled over and asked if I needed help. But the best part was. Toby and I just laughed. We were drenched from top to bottom, but it was so funny. Because if it COULD go wrong it DID go wrong!! I'm making sure it goes in my memory bank. Hoping it goes in his too.

On a totally different note. I wanted to give a shout out over to the SBkids blog. We are trying to do a giveaway and help raise awareness for SB and raise support for a program a mommy is trying to start. so click here to find out more and enter.

Hope you all have a wonderful day!! Goodnight!

Kari

Monday, August 30, 2010

I can feel it....

There are days. More days than not. That I cant feel it. There are weeks when there are only brief moments of it.
This is not one of those weeks.
I'm talking the feeling of having a child WITH special NEEDS.
Do we do things every single day that most parents dont do? absolutely. But its just our life.
Do we deal with issues that most dont think aout? Probably. But it really becomes normal.
So sometimes when I have a week like this one it kind of punches me right in the gut.
We've been trying to get certain medical equipment for Toby for 2 weeks now. With zero results. well finally some today. Which meant numerous phone calls and lots of stress.
We have an appointment every day this week but Friday.
We found out today that Toby's speech level is at the age of a two year old. We found out Toby needs speech therapy 2 xs a week. That puts us at 4xs a week now. We also are signed up for an ocupational therapy evaluation which if needed will put us at 6 times a week every week for therapy!! My heart started pounding at the thought of it.
Toby just got glasses last week after a 3 hour appointment. And now are dealing with the glasses battle.
We are dealing with questions and concerns for his braces and belt (appointment on wednesday)
Pushing tons of Goals for therapy (appointments Tuesday and Thursday)
And waiting for the phone call to schedule the ocupational evaluation.
So needless to say. I am feeling it!! I think our whole family is. This on top of homeschooling for the first time in my whole entire life. It's been crazy. My stomach has hurt worst than it probably ever has.
I know that God's grace is all I need to get through this week. I know that I will get through it. That next week I will either look back and say, "How in the world did I survive?" Or Ill say "Not too bad."
But it's the way it goes with a child like Toby. We have most days where its just life. Day in and Day out things we deal with but its our normal.
I'm so thankful that this is not our normal!! But I sure am feeling the stress this week.
Please keep us ALL in your prayers. I fuss about me, but Toby is the one really dealing with all of it full force.
Just wanted to add a funny picture that says it all for me this week. I tried to switch things up and do our math lesson outside...

Saturday, August 21, 2010

Toby with those arm crutches

Wednesday night we had our first teen meeting of the school year at church. We started off with praying for each other. THe girls and the guys split off. I ask all the girls to pray for Toby as he keep working on his arm crutches. (he hates them) So we sat there I heard all those girls pray specifcally for Toby. AMAZING!! The next day I sure had some fire under my tail to get him working even harder. And thats's the day it happened. I left his walker in the car (which I used to do when he first go it because I hated using it so much) we finally had a break though. We even took them to a store today and outside!! He's doing really well... And dont even try to tell me it wasnt because of having that prayer time!!
video

ps I told Toby about all the ten girls praying for his arm crutches. All day he said, "really?" "For real?" and then he woudl say " tell me the story again how they prayed for me."

Saturday, July 24, 2010

Social Security...Oh How We Love You!

So, I know it's either tons of posts or nothing at all for a while.
Well, this one is totally worth posting.
It couldn't have waiting for a better time.

We got our letter from SSI today.

And...


Drum Roll....



Based on the facts they have received We will not being paying them back the 5,000.00 due to the fact that it was their fault!!

Love it!!

Love it!!

Love it!!

We had planned on getting a lawyer and fighting even more if we been rejected yet again, But hooray!!! We don't have to go down that road!

I know many of you have been praying and asking about it. So that's it. Such a long drawn out process to end with such a simple letter, but we are so thankful for our little letter.

Nate even joked we should laminate it and frame it!! :)

Friday, July 23, 2010

Holding Hands

This past week was our first double duty therapy. Tuesdays and Thursday Physical Therapy session for Toby. Between that and getting ready for VBS my poor house has suffered. For that reason this will be a short but sweet post.


If you read my last post over at SpinabifidaKids you would have read that Toby stood on his own for the first time.


Selina (our new PT for Toby) has really sparked some strong desires for us and really set the standard quite high. But oh it's so worth it.


Toby has walked with his arm crutches on his own!! Now this isnt the I'm standing at the kitchen and he takes steps across the living room all by himself. This is a painstaking process of me making promise after promise to not let him fall just to get that first step with my hands just inches from his arms.

It goes something like this.

Mommy: Toby do you trust mommy?

Toby: Yes..but but but...*tears*

Mommy: Toby I promise I'm not gonna let you fall. I promise.

Toby: *sobbing*

Mommy: What's scary Toby? Tell me why your scared?

Toby: I'm gonna fall

Mommy: I promise Toby. I promise promise promise. I will catch you. I promise to catch you


Then finally we get that first step. Of course then we get like 5 or 6 more right after that. And of course he's all smiles and super proud of himself. (which makes the tears and frustration totally worth it)



Tonight was an awesome night for me. Tonight I had Toby use one arm crutch and I held his hand while we walked to the couch in the living room. I have never been able to hold Toby's hand while he took a step. Its one of those things Ive cried over and I've just missed. He used to try to hold my hand in his wheelchair all the time and it just never worked. But tonight we got to hold hands!

It was big!

I didnt get a picture of it because of course I was busy, but I thought I would at least post a picture of our bedtime reading. Toby picked out 'Fancy Nancy' Oh that boy. No matter how much he loves Star Wars, Army men and all kinds of stuff. He'll still pick out something like Fancy Nancy!!


Wednesday, July 14, 2010

Belief

I wrote a post today for the spinabfidakids blog, but I really thought it belonged over here too, being that it was mainly about Toby. and since this blog is called raisingtoby! : )

Click Here to read my post over at the SpinaBifidaKids blog.

Saturday, July 10, 2010

It's been a while

just felt like i needed to add a picture.

Well let me give you the general news...its been a while.

Lovely medicaid has decided to take forever to approve ANYTHING. But low and behold everything has finally been put through the system.

Toby now has AFOs!!!! The short braces we have been praying for! With these braces came twister cables that attach all the way up to a belt on his waist. This has not come without some problems. We ended up with some serious sores and such for a little while, but got the belt readjusted and now we are good to go. God has really protected us from potentially serious issues.

We have yet to start therapy with Selina. However, we did get to go meet her and do an evaluation. Therapy will start this following week. You wont believe what she said at our evaluation. Okay, yes you will, because we have a pretty incredible God. She said that she believes Toby is..and I quote, "An excellent canidate for independant walking." Did you catch that? Let me rephrase. She believes that there is a good posibility that Toby could one day walk without the use his walker and without the use of crutches. She seems to be my type of therapist. She is going to push Toby to his fullest potential. We will be starting therapy 2xs a week instead of just once to try and give him a little bit of a boost in the direction she wants him. We are so thankful to get started on this road regardless of where it takes us.

God has been so good to us and has taken care of so many of our needs and even our wants.

We have yet to hear back from SSI on the 5,000 they are pretty sure we owe them and will begin the process of dealing with royalty checks for Nate's books.

Toby seems to be in a new stage of life right now. He's hit the age where kids directly ask him what is wrong with his legs. It is frustrating and heartbreaking, but we are getting through it and figuring out what the best way to handle this is. One mom actually sent her daughter over to our table at a restraunt to ask us What happened to him? (and yes in those words) I looked at her and said, nothing and turned arond. I really wanted to say, nothing sweety. what happened to your mom that she would think it is appropriate for you to come over and ask us that? Luckily I didnt say that because I'm pretty sure I recognized her from our summer VBS program after the fact. What a great testimony that would have been. At camp this past week someone asked Toby what was wrong with his legs. Toby just shrugged his shoulders and got really quiet. Just typing that makes my heart hurt all over again. I know that most children mean well, and either have never been exposed to a child with special needs so upclose and personal, however it is still hurtful and trying.
Toby is adorable with his walker and we do attract attention wherever we go. Sometimes it is welcome attention like when Elmo comes up and gives him a hug at a show, but sometimes it is unwelcome thats for sure. So we take it as it comes and pray for Gods grace and wisdom. I wonder where I will be with all of this in 6 months. If we will have a specific plan when asked questions, if Toby will begin to ask more specific questions. Or if this is just the way it will be for a while. Looking back on previous posts it seems like nothing ever really stays quite the same.

Well its been a while and I had a lot to catch up on. Have a great weekend

Friday, June 4, 2010

Hello Selina

So my last post...

kind of a bummer...

But isnt it funny the way God works. We were recommended to two therapists for PT for Toby. One was recommended by two seperate individuals. We were also told that we would wait, plan on waiting, waiting a long time. Maybe not even plan on getting in ever.

But isnt it funny that God knows things that we didnt even know or understand at the time.

I called the first one. The one highly recommended. The one recommended by two different people. The receptionist let me know there was a 30 person waiting list for this therapist and I might as well look else where. Well, I asked to be number 31 and then asked for Selina (thats her name) to call me.

After many many more calls. And wanting to bang my head up against a wall from all these touchy feeling, love yourself and dont ever push the child therapists I got a phone call.

It was Selina.
Funny I thought.. Courtesy call. That's nice. Then she shocked me.

"I have permission from my boss to move you to the top of the list"

Fantastic I thought..now maybe only 1 or two months.

NOPE!! Try next Thursday. Isnt that crazy???!!!

So, here I go again worry worry worry about things that God had totally planned out and totally in control.

I wish I could just learn that little lesson...but chances are I'll be back on here...worry worry worry.

On a totally different note...

Toby had a VCUG and ultrasound done this past Thursday. They didnt find good things. His Kidney refulx is back and with the number 3 (not good) Now they are talking surgery, tethered cord and all kinds of stuff id rather not think about. They moved up our july appointment to next week. They want to do a full exam see nuero and everyone. This stuff is just plain scary. I HATE kidney stuff.

But,...okay...not going to worry worry worry

LOok how quick I forgot my lesson!! : )

Seriously though please be in prayer for us this next week. We have a hearing with SSI over a few thousand dollars they are pretty sure we owe them and these doctor's appointments.

Sorry to be lengthy. I could have written about 4 more paragraphs!!

Monday, May 17, 2010

Losing Todd

It was a sad day at therapy for us today.

We walked in to start our regular Physical Therapy when our PT dropped the bomb on us.

He's changing offices.

Me: Oh? Well, we can follow you, right?

Todd: You CAN, but the new office doesn't take medicaid.

Me: Oh...then we cant.

silence........

tears start welling up.... more tears start welling up.....and some more....

feeling like a total ninny. but cant seem to get the tears pooling up under control.

Todd went on to explain that its not one of those happy moves. Its because there are problems going on at the office he is at right now. It almost made it worse to know that this move isnt just something that is better for him personally...It's because of well....most likely...stupid people.

I somehow made it through the rest of therapy without boo hooing like a child.

Luckily all of this went over Toby's head because he was too excited to see Todd and play.

The water works did start big time after getting on the phone with Nate. There's something about hearing my husbands voice that makes my tough mommy just melt away into a puddle full of tears and emotions. (unfortuantly for Nate)

As I wrote before, so much has been accomplished this past year. We started with Toby shortly after his 3rd birthday and we will be finishing our last session shortly after his 4th birthday. Todd has been the core of all of the changes we have experienced. He has been the push, the drive and the knowhow this past year.

I am thankful for the time that we have been able to pick his brain, but am just plain sad for the time we will miss out with him.

I know that when we sit down with Toby to let him know it will be a sad day in our house.

Please pray for us as we look for someone to replace Todd....even though he isnt actually replaceable.

Thursday, May 13, 2010

Three to Four in Six days

It has taken me some time to decide to blog this or not. There are just certain parts of our lives that dont belong on blogs dont really need to be opened up for everyone to see, read or feel. But there are those parts that are still good to share whether or not they be hard.

Toby's birthday is in 6 days. Pretty big deal. It's the big 4!!!

Now I'm sure you are thinking that the last statement doesnt seem to go along with the first paragraph, but for me it does.

There is one problem with this birthday for me. 4 seems so much bigger than 3! This birthday is a big deal for me because I feel like the difference between Toby and other children will become more apparent. Yes, its only 6 days older than he is today, but now when someone asks I 'll have to say, "He's 4." And then you get the surprised look. The surprised look is always a bummer.

So even though his birthday in and of itself is incredible. I can remember being in the hospital with him like it was yesturday (and if you ask Larie that's pretty remarkable for my memory) The thought of his disability seeming .....stronger....that's not the right word, but I think you get it. Is a bummer.

As I write this out, I realize how incredibly flawed my thinking is. Isnt it funny when you see something written down that you realize how you arent focusing on the right thing. The last few days I've been focusing on the things Toby cant do. (I guess this proves I am not super mom) I've been focusing on the learning issues, the struggles, the hard parts. When in fact as it gets closer to his birthday I should be focused on all the things he CAN do.

So everyone, you are being a witness to a change in heart as I write. Funny how God works. Yes, this birthday will still be hard, yes it will still be a bummer to say that he's four and someone react shocked,but that's okay, because now im going to write a few of the things we have accomplished this year.... just a few.

Walking ALL THE TIME!!
Climbing in and out of his car seat
Going down a small step with his walker
Singing in the car
Wanting his braces on
Going Potty
Working on arm crutches
Putting the wheelchair in storage

So, looking at that list makes me realize.,,maybe three to four isnt so bad after all. we've had a pretty eventful year three!! Maybe four will be even better!!

Saturday, May 8, 2010

The end results of Galleria Mall incident

so what's happened since the big Galleria thing in Dallas, you ask? Well, if you are a facebook friend with me you've heard bits and pieces.. (if not ask to be my friend I can never figure out how to look anyone up on that thing)

So here's what went down. After repeated messages from lots of friends from all of the country to the Galleria. One finally got a little more than a form letter back from someone, stating that they hadnt even heard from me. NOT TRUE!! I hadnt written to them and as I said before Nate had called them the very day it happened.

Well, I wrote AGAIN. Explaining who I was. Within a week I had an email in my inbox from a very nice lady by the name of Leslie who is the Vice President for Simon Malls in Texas. She asked that I call her or that I send her my number.

So of course I called. (during nap time so that I could hear everything HA!)

She was an incredibly kind lady who was extemely and I believe sincerely apologietic. She heard me out and heard about why I felt it was a big deal and never once tried ot rush me off the phone. (Huge in todays day and age) She then asked some questions in regards to the conversations Nate had. They still couldnt figure out who he talked to. I called her back later that day with some more details from Nate about whom he talked to.

She wrote me an email later on that day. They are pretty sure they have figured out who made the first phone call and have narrowed it down to 4 men who called Nate back that day and chewed him out.

Here's the exciting part.

Because of this all the security guards for Simon Malls in the state of Texas have now undergone training for situations like this one. To make sure that it is actually handled correctly!!! I think that is the GREATEST accomplishment out of all of this. What a wonderful way to end this situation!!

On another note...we are receiving a 100.00 visa gift card from Simon Malls. : )

So, I hope this is an encouragement to you, especially you SB mommys. We can make changes. We can do this without being vindictive or ugly or even overdramatic. We dont have to become bitter but we can take action in hopes to improve things for other children!!
And sometimes...just sometimes...it actually works! : )

Friday, April 30, 2010

A scary time, but a good time

We are going through a somewhat scary time right now. It looks as though we will be losing Medicaid and SSI benefits for Toby in the very near future...say in a couple of days to a couple of weeks.

This all started with Colleens post about Medicaid waivers. (I appreciate the post by the way)

However, this started a chain reaction.

Nate and I knew we were close to the income level cut off for SSI and were already over the income level for reguarly medicaid. We knew that when Nate published his first book that it would be putting us even closer. However, with his second book coming out in the next month I knew that it was mostly likely going to put us totally over the income level. (and yes I said SECOND book, how neat is that?)

So after reading Colleen's post decided I should start to do a little research and come up with a plan. Now granted when I started making my phone calls I thought this was for FUTURE reference, not right now!! So I started with my list of contacts and my notebook and went through it all.

TWO HOURS LATER....

It became very apparent that as soon as we get Nate's next royalty check we will be pushed over the edge. This is HUGE for us. We have relied on these programs for all of Toby's medical care. And let me tell you, All you tax payers out there. We appreciate it. and have been extremely thankful for it. A small part of Toby's NICU bill was over 100,000 and that was just the first month of his life. So needless to say this is something that is necessary for us and for Toby.

There are other programs that we can go through and things that we can apply for, but it's just plain scary. I know that its going to work out and I think we have most of it figured out, but it's still scary. All of a sudden working with copays and referrals and things that I've never had to worry about before will be a whole new world to us. The timing of all of this to. Because of Toby's medical care being ongoing, with therapy and all kinds of things we abssolutely can not have a lapse in coverage. So obviously that is important.Also, we are fighting SSI on a supposed overpayment of a few thousand dollars at the time. If we lose SSI they will want that money back out of pocket!!

So, I write this for a couple of reasons, one to tell you Im scared. Im pretty nervous about working out the details and for this to put a new aspect of our lives. So I need prayer.
I also tell you this because I know that God is good and I know that He is soverign and I KNOW that He knows all of this and the end results.

God promises to take care of our needs. Toby needs medical care reguarly. I can rest in the promise that God promises to take care of that need and that God loves Toby more than I could ever dream of loving him. I believe that this is a good way for me to increase my faith.

The neat part of this too is it seems that God is reminding me reguarly that He takes care of us as a family. Little things like a stove, one that I specifically wanted down to the smooth top, completely given to us. A desk that I needed to get things ready for homeschooling delivered straight to our new family room. There is so much more, and they are all just little reminders right now of how God takes care of us. And if He can take care of something like a new stove with a smooth top. I'm pretty sure He can take care of Toby's medical insurance.

Thursday, April 15, 2010

Please follow the link

I'm sorry I keep doing links, but once I write it once I really dont even have the time to copy and paste...Nap time is fixing to end. Please take the time to read this, please forward this to people you know. Id really like people to be aware that things like this still happen so they can be prepared to help someone if they ever see something like this. We should all be prepared to take action when needed.
So click here for the story of what happened to us this monday. but you might want to take a blood pressure pill beforehand

Wednesday, March 31, 2010

crying

I wanted to share this post from the other blog i work on that I wrote. I think its important for people to realize that sadness doesnt just end but that it is not continuous either. and that sadness is just sadness and it's okay.


so click here to read.

thanks for all you who take the time to read about us. Also, Toby just got casted for his new braces and we should be getting them this week or next. I'm sure Ill be putting pictures up soon

Saturday, March 20, 2010

Bruises

Can I just say sometimes I am not the perfect mom! I know it just shocks all of you to hear that! : ) But really sometimes I feel so far from it.

Yesterday Toby got to watch his mommy throw a bonafide temper tantrum. I write about this not because I'm proud or think its cute, but because I like to be super honest on all the aspects of my life with Toby.

We are really working on independence with Toby. Trying to get him to walk down hill on our driveway to go up to the van door, open it and then climb in, get in his seat, turn around and get buckled in (he can unbuckle just not quite buckle) Well, imagine trying to do this with a walker with four wheels and being three years old and trying to control yourself going down a slope. Doesnt really work out well. Well, for some reason lately Ive been getting hurt constantly by that walker. And as most of my friends know I have extremely low pain tolerance. To put it mildly. The other day he slammed his walker on the top of my foot and I ended up getting one nasty bruise on my foot. Well this day in particular he wasnt wanting to do ANYTHING himself. So he started being whiney about getting in the vain. Well, in all his complaining and worry he rammed his walker right into my shin. I immediately got super ticked off as I felt the large knot form and the almost instant bruise come into view. I totally lost my temper with him and got frustrated. In my head I was hating my life, hating his walker, and just hating the daily little struggles. I had a down right pitty party, bad attitude temper tantrum. Luckily most of what I was thinking wasnt coming out of my house. Nate, (My husband) who was sitting quietly in the front seat watching all this would have been shocked I'm sure. (or maybe not) Anyway, immediately I realized how wrong I was. It wasnt anyone's fault. Things happen. I should love that walker. I should kiss the people's feet of whoever invented that walker. That walker makes it where Toby CAN walk. A year ago Toby had a walker but never used it. I should be thankful that I have a son who is walking and using his walker at all. So much has changed this past year and if my biggest problem is having some big ugly bruises then hey I think (in hindsight) that's a pretty good trade off if you ask me!!

Thursday, March 4, 2010

Quick Update

Some of you know already...but some of you dont...


A while back I posted about our goal of AFO's. Never liking goals. I felt really funny about not only having a goal, but writing about it.


Well.....

Im sure you see where this is going.

Monday at therapy. Todd, said, "Let's go ahead and call about getting him some AFOs. There's no reason really for these any more."

I wanted to jump up and do a little jig. But I didnt. I nodded my head and "mmm hmmm." Politely.

So, Go Toby Go!! We did it!! Well, not officially yet. Now I have the long and frustrating job of being an obnixious mom by calling doctors, therapist and orthopedists over and over again until someone actually signs a piece a paper and faxes it in.

So, that's that. I am sure I will be posting pictures when we get them.

Kari

ps. for those of you who are confused. Toby has KAFOs right now. they go all the way his leg. AFOs go below his knees.


Oh yeah and ONE MORE THING. Milo took his first steps today!! Hooray!!!

Thursday, February 25, 2010

It's Not all about you

Weird Title, right?

Well, its been 3 weeks since Ive written. Quite possibly the longest I've gone. Well, the reason is my life is not all about Toby. I know it might seem that way, ive got one blog totally dedicated to HIM, another blog dedicated to spina bifida and I make necklaces to help raise spina bifida awareness. But really, its not all about him.

I have two other beautiful amazing just as talented, just as strong, just as brave children.

I want to blog about them for once. In fact I might just have to changed the title of my blog.... : )

Grace, her birthday was on February 18th. She has only had one birthday without Toby in her life. In fact she was 15 months old when Toby was born. She was truly God's grace in my life during my pregnancy with Toby and his month long NICU stay. I didnt have a choice to get up out of bed or stay and get depressed. I had Grace who was still depending on me to be mommy. (the best job in the world may I add) She is a handful. She's five years old now and I see so much of myself in her and so much of her own unique personality. She loves pink. She loves to swing. She loves climbing on things she shouldnt climb on. She loves to sing and absolutely loves church, especially her sunday school teachers. She loves veggies and I mean looves veggies. She gets in trouble for eating too much brocoli. She can be the most patient and loving child I have ever been around and then she can be the most selfish, rotten one too! She sits through therapies for Toby. She wants to go to Doctor's appointments with him. She helps him into the play place at chick fil a. And yells at any kid that might come close to stepping on Toby's fingers. She waits patiently hoping to get a sticker from a doctor or therapist as Toby gets his millionth sticker. She makes me proud. She helps and loves to help. She has an incredibly strong desire to learn. She designs buildings for missionaries with her blocks. I love her.

Then, There's Milo. Oh sweet Milo. His birthday was today, February 25th exactly a week after Gracie's. He's One now. His personality is coming out full force. He is truly the happiest baby in the world. He would smile at a gremlin if the gremlin smiled at him first. He has the best giggle Ive ever heard. You could seriously tape it and sell it. He crawls with his booty straight up in the air, flat footed and it makes everyone laugh. He has a mullet full of curls and I could cry at the though of cutting it, but could also cry at the thought that my kid has a mullet! He loves to squint his eyes at you, especially when you have the camera out. It took him what seemed like fourteen years to learn to clap his hands. He's not walking and we arent in any hurry. He loves mac and cheese. He loves brocolli. He loves stuffed animals. He loves his friend wesley. and all the babies at church. He loves his sister and brother. Every morning I hear him and Toby playing till I come get him out of his crib. He's a bad baby who likes to get into the potty, rip things up, unplug the night light, throw his food on the ground, and all kinds of stuff. He drives me crazy. He loves his blankets. He could be screaming and if you give him his blanket it's like a tranquelizer. : ) he loves it. I love him.

So, yes it's been three weeks without a post. But it's been three good weeks. Weeks of planning birthday celebrations, having birthday celebrations and just enjoying all that God has given me. My life is full.


Weird Title, right?

Friday, January 29, 2010

Wanting you to see both sides of the coin

So the last couple posts have been pretty incredible. And I am thankful.

But I also want to be honest and want you to have a glimpse of both sides of the coin.

Tonight was a great night. We spent time with great friends and had some wonderful conversations. However, Tonight had its sadness also.

Tonight, Toby realized something or at least he voiced it for the first time. There was a baby at our house that had just turned one. He was walking around like a champ. Super cute. Toby realized the difference.

At first it was just a quick sentence. "The baby is standing." and then throughout the night it progressed. "The baby is walking." And then a little more. "The baby is walking without a walker."

My heart is genuinely heavy tonight. Its hard to say all around sad, because it was a good night. But just heavy.

After Toby thought these things through he said, "I am going to walk without my walker." And then he tried. Needless to say it didnt quite work out in his favor.

I saw him realize the difference tonight. I saw him see his dependence on his walker and the lack of dependence this little baby had.

It was hard to watch and I wanted to take it away and not let him figure this out. However, I also know that this is also the way God works sometimes. Someday in the near future Milo will be walking, (he'll be one next month) and this will be a transition for Toby and for us. Maybe tonight was God's way of easing Toby into the transition and into the thought process. It is hard to think that his baby brother will be doing something that Toby is physically unable to do. It is hard, but it is part of our life.

As I write this I am reminded of our dependence for God. I'm also reminded of the fact that sometimes its very hard to admit our dependence for God. So maybe, God wants to use this as a reminder for me, and for all of us, that yes, it's not fun to always admit we are nothing without God. We can do nothing without the strength and the very breath that He gives us. But that is the way He designed us. We need a Savior and we need to be dependent on His Strength, His Grace, His Sacrafice and His Love.

So, yes I go to bed tonight with a heavy heart. But also with a heart reminded of how much I truly need my Savior.


kari

Thursday, January 21, 2010

Things are good

Okay so the past week or so The Thomas household has experienced some changes. Well, I guess I should say Toby has experienced some changes. There has really been so much to write about that I don't even know where to begin.

First and foremost I believe I have seen miracles happen and when a miracle happens I have to give God the glory and the credit!!

A week ago Toby could not stand at all with his left Brace unlocked. (It's harder for him to stand or walk because it requires more strength to walk with his knees unlocked--more control.)His knees would just drop to the ground, and he just could hardly get back up. He has been walking for about a month with his right one unlocked. (It has always been his strongest.) Well, Todd (our incredibly wonderful amazing therapist that God uses to help Toby) wanted him to walk without the left brace locked also. Honestly, I have to stop and admit I had NO FAITH. I didn't even want to try to go down that road. Toby would cry and ask me to lock his brace. He knew the difference and like me he didn't think he could. So I blew Todd off a couple weeks ago. Well, then last week he let me know how important it was for us to push for it. So here I go, with no faith, but hey we will push for it. I like Todd and didn't want to lose the mother of the year award. : ) We had about two days of misery. Crying, not wanting to walk, not wanting to stand, I felt like we were going backwards, and I kind of wanted to curse Todd's name at this point. I wanted to be content with Toby walking. I mean isn't that enough of a miracle? Well, after 2 days of super rough times...I'm talking some really bad falls. Enough to make me feel like I was for sure having a heart attack or that we might be on the way to the ER...Toby is walking and he is walking ALL DAY without either brace locked. How is it that I thought this would take months, and we might not ever get there to just a few days and here we are???

It really is a miracle!!! So I don't like to set goals with Toby because there are absolutely physical limitations that it doesn't matter how hard we work, we just won't break through. But for some reason I really want to share one. I know that God is the one that will get us there IF and WHEN we are supposed to be there.

Toby is wearing KAFOs right now. You can check out a picture here. I'd really like to see him in AFOs by the time he is four. This would be huge. Right now we can barely put him in a swing because of his braces, barely hold him, have a hard time getting pants on and off, and his legs are just bulky and heavy. AFOs would be HUGE for us because they are soooo much smaller. I want to share this with you because I want you all to have a specific way to pray for us. So please pray for continued strength and for AFOs.

God has done miracles this week, but I also don't want it to go unnoticed that I have an incredibly strong little boy. I have never ever seen a child work so hard in my life. Now he doesn't always have the sweet spirit, (but, really, what kid does?) but he worked and worked and worked.

I have so much more I could write, but I will save it for another day.

Good night.

Friday, January 15, 2010

Toby's Clinic Appointment

So yesterday was a wonderfully exhausting day. It's one of those days where you see God work, but you still walk away exhausted.

Toby had another clinic appointment. He underwent CT scan, VCUG test, Urodynamics Study, and an Ultrasound. What a day for my little guy!!

He was fine as long as everyone let him know that there were no "IV Pillows." He really hated it the last time we were in the hospital and they taped a board to his arm for his IV.

So, we left the house at 6:15 a.m., and I couldn't believe how much he talked on the way. The last thing I wanted to do was talk, but I had to smile at his spirit even early in the morning.

He has been excited about talking about medical stuff and his doctors and who they are and what they do. He's starting to put everything together more. So first we saw
Dr. Pepas who let us know that his bladder is great!! However, we then found out that his reflux is back!! Honestly, I didn't even know kidney reflux COULD come back. So that was kind of a shock. So now we are on antibiotics all the time. Bummer!! But we have to protect those kidneys.

We then saw Neurosurgery. Toby's ventricles were small, so they adjusted the pressure again. Tullous was planning on this the whole time, so no big deal. It's incredible that they can do this with a magnet!!

Then we saw ortho. Now I will have to admit that this was my shining moment. My moment of pride and even the joy of handing a doctor his shoes to eat!! If you can remember back to my last post, Toby saw Ortho and we were told that he was functioning at the highest level on his spine that I had ever heard any one say, L1!! (By the way, the lower on the spine the better because the lower the function the more muscles and things are functioning. For example, L1 is much worse than L5.) I was super upset and frustrated. He let me know not to plan on walking and that we should just help him learn enough to make it to a bathroom and stuff. Super depressing. Well, only about TWO MONTHS LATER, Toby is not only walking but is walking all the time. WITH ONE BRACE UNLOCKED!!! Super HUGE!! Luckily, Toby was in the mood to show off and walked all over the place for his doctor. Needless to say, the doctor was surprised and then said Toby was functioning at the lowest level I had hear--L4 OR even L5!!! So that was an incredibly great moment for me. Just another time in my life that I can see God working miracles. It was nice to see it in the face of a doctor who wasn't convinced a couple months ago.
My God is good. And my Toby is working hard!!!

So that was our appointments. We left in record time, about 3:30 p.m., came home, made dinner and out the door for upwards practice. It was a busy day, and I'll admit that I am fighting the grumpies today. But I am FIGHTING THEM! :)

Sunday, January 10, 2010

Giveaway

Im trying to get some more traffic over at the other blog. and so im starting a little giveaway for the necklaces that I am making to help raise awareness for Spina Bifida.
This actually raises awareness because 50% of the profts go to The Spina Bifida Association!! :) (unlike putting your bra color in your status on facebook for breast cancer)
so go over to www.spinabifidakids.blogspot.com to check it out and see how to enter. thanks

Friday, January 8, 2010

Popcorn Night

So, I was sulking one day about the lack of Friday night fun that my family has. I was extremely jealous of a friend who had movie night with her family and let the kids stay up late on Friday nights. I thought how wonderful that would be, but my husband's not so wonderful schedule means that he works on Saturdays. (Its actually his earliest morning of the week)
So as I sat there engulfed in self-pity a thought hit me. Why not still have Friday night be Friday night? Yeah its a bummer that Nate works, but so what if the kids stay up late?
So that is when I initiated Popcorn night. Now I have to admit Popcorn night is not an original "Kari thought". It's something my parents did for a while when I was growing up. We would have Popcorn (of course) watch a movie, and then sleep WHEREVER we wanted to in the house. I can remember on occasion trying to sleep in my closet just because I could.
So now Popcorn night is in my household. Every Friday we rent a movie (we rent it on Tuesday because Blockbuster has a deal where you rent 2 kids or family rentals and you get 2 for free) and break out the popcorn and then let the kids sleep in each other's room, in a tent or something like that. (no closets quite yet) They love it and really look forward to it.
Well, lately, they are super loving Mario Brothers. Thanks to the Wii Nate purchased not so long ago. So tonight is Mario Brother's party night. We are watching some mario brother's 80s movies. I am going to make green cupcakes in honor of Yoshi. : ) SO be looking for pictures soon.
Just a side note. I am so thankful for Becki and really indebted to her for passing on her attitude to me. Her husband is a park police and used to have super crazy hours. (this past new years was there very FIRST one together since they had been married) Well, instead of feeling sorry for herself (like I like to do) she would just have fun with her kids and still make things special. She was the one who told me to just keep the kids up with me on New Years Eve instead of sulking in my bed waiting for my husband to come home. So instead of sulking this New Years Eve I had someone to kiss at midnight..Actually 2 people to kiss. Gracie and Toby!! : ) Anyway, I am so thankful that she just led by example instead of hitting me upside the head and telling me to get over it. Ever since we started this tradition of Popcorn night I have genuinely been a happier person. Instead of focusing on all the things that we can't do I am focusing on the things that we can do. We jut have to tweak them sometimes. What a much happier way to live life.

Thursday, January 7, 2010

Necklaces

I wanted to make sure everyone was able to check out the link to the spina bifida awareness necklaces Ive been working on. Sorry for those of you who have already seen this on www.spinabifidakids.blogspot.com

click here for the link to see pictures on www.spinabifidakids.blogspot.com
50 % of all profits go to the Spina Bifida Association!