secretramblingsofapastorswife

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 happ...

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.

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...

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 muc...

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 c...

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 ...

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 therap...

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 fo...

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!! 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."

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!! :)

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 T...

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.

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 r...

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 y...

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...

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 y...

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 abo...

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 not...

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

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

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 e...

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 ste...

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 fiv...

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 wor...

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 ...

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...

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

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 ...

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!