secretramblingsofapastorswife

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...