secretramblingsofapastorswife

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...

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

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...

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...

Okay. So of course I tried to title this to be able to get your attention in some way, shape or form. I really wanted people to see this if you couldn't tell. This happened tonight, and I really couldn't wait another day to share it with everyone. The picture is not super impressive since it was done by my incredibly sick husband with his camera phone. Poor guy, he was barely functioning. I know you can barely tell what's going on, if at all. This is Toby and Mommy dancing together for the first time. Now, granted, we've done the crawling dance and the on your knees dance, but never ever ever the hand in hand standing up dance. This is one of those moments that I'm so thankful that I absolutely cannot take for granted. I was able to dance with my son tonight. WOW OH WOW OOOOOH WOW! And it gets even better. I gave him the chance to sit back down, and he asked for his walker. Then Gracie and Toby danced for the first time together. I know that Gracie doesn't unde...

Well, I'd just like to say how incredible it is that God takes care of things. Since I didn't know about the appointment beforehand, I had to bring Milo along with me (he's still nursing) and then of course Gracie to help with Milo. So picture Milo in his stroller, Toby in his wheelchair with Gracie pushing, and Mommy pushing Milo while trying to balance a day's worth of stuff in a bag and a walker. It took forever to get through the parking lot. Luckily Nate (my husband) was able to meet us there just in time for Toby to get called back for his CT Scan. The problem with the CT Scan was that most kids at Toby's age need to be sedated. Well, praise God, we never have. The problem with that was that we weren't prepared if Toby had needed to be sedated. He had already eaten that morning. So they warned us that we would be sent home if he didn't cooperate with them. Meaning we would do this all over again another day. So I went in there with him, and as soon as ...

So today I found out that tomorrow is clinic day for Toby. About every 6 months we end up having a long day of appointments...tests, doctors, x rays and ct scans. The thing about these appointments is that the night before can easily put me into a panic. I never know what tomorrow is going to hold. I don't know if tomorrow will be uneventful. If They will check everything and we will leave on the same road that we came on. Or if tomorrow will change the next days, weeks, months or even years. Walking into these appointments I always have in the back of my mind that they could find something on the CT Scan or see something else wrong. I never know when a new surgery will be scheduled or a new type of therapy will be added. The whole process of these days is overwhelming for me. I don't know if this will be the year that they have to sedate Toby for the tests, or if there will be a cute nurse that he will flirt shamelessly with. I guess that's the scary part. I just don'...

I've been wanting to write this for a while, but with three little kids keeping me busy it seemed like my time was cut very short. Poor Milo has a double ear infection, roseola and is teething on top of it all. Needless to say he didn't find it needful for me to have any extra time to sit down and write. It's been a while since this story actually took place, but I thought it noteworthy enough to come back to. There are aspects of our lives that are hard, and there are aspects of our lives that our wonderful, but then there are those aspects of our lives that are hard and yet so incredibly wonderful at the same time. Hope that makes sense! My husband is the youth pastor at Leon Valley Baptist Church, so of course our children are regulars in Sunday School. (It always makes me smile when their attendance charts are completely full.) Well, for a while there they were studying different miracles that Jesus performed. If you are at all familiar with the Bible I am sure you are ...

Toby's therapist unlocked one of the drop locks on Toby's KAFOs last visit. Well, I wish I had a "before" video. But there is a HUGE difference. Keep praying for Toby. This video was done with my phone, but I think it's still incredible!!!

So, today we had our appointment with Toby's Orthotics guy. (I can never remember what they are really called) I wanted him to check on the work the guy in Florida did and make sure he thought Toby's heel was getting better. So out I march with three kids. Gracie, (who has a weird rash on her face) Toby,(who isnt happy about getting his braces worked on) and Milo (on his last diaper) Oh and dont forget, Me. (whose coffee pot messed up and hadnt had a cup of coffee yet) We were certainly a fun bunch. So we get there and everything is going well. Jim gives us the go ahead to start wearing the braces again and works on one little piece. Before we leave we put Toby's braces back on. At this point it had been over two weeks since the last time Toby wore the braces. It showed. He just broke down on my lap. He cried and cried. Part of it was just plain bad and part of it truly broke my heart. Life is so much easier for him without those braces. He can crawl around playing and do a...

Its funny to me how a small moment in your life can change it so completely. The interesting part is that I cant even remember the day or month that it happened. But it happened and today I am a different person because of it. It was a Sunday morning and I was sitting in Sunday School. Nate (my husband) was teaching the teenagers (he's the youth pastor at our church) and I was beginning to zone out. Sometimes it's really easy as a youth pastor's wife to think that the message doesn't apply to you because it's geared towards the teenagers. Not true.(and by the way I know that's horrible) This particular morning Nate was talking about children with disabilities. This of course caught my attention a little bit. I heard him read an incredibly familiar verse. Psalm 139:13-14 For you formed my inward parts; you knitted me together in my mother's womb I praise you, for I am fearfully and wonderfully made Wonderful are your works; my soul knows it well. Sometimes I ...

We have had an awesome time this vacation. It's been crazy, but incredible. For part of the time we were able to go up to Greenville,SC to visit my parents, meet Nate's editors and see the college campus again. My parents took us to the Japanese Steakhouse that was in town. Toby wasnt quite so sure about the fire, but after a while he eased up to the idea. Milo was never too sure about it. Then of course the most fun thing was the free thing. My parents found some empty box lids and let them slide down their front yard. (I'm sure we looked very classy while we were doing it) The kids had a blast and thats what was important. I dont know why the things kids love the most are also embarrassing! To me there is something incredible about seeing Toby play a game that doesnt have to be rethought or redone to make it possible for him to participate. I feel like a lot of our life is spent doing just that. This little game was perfect and just plain good for my heart because he play...

So, tonight I took my first ever trip to IKEA. So, tonight I cried in the middle of IKEA. Let me explain. In my head a feel like I have a running list of things that make me sad in regards to our life with Toby. For example, I might see a child do something that Toby will not be able to do. Knowing that it will not be a part of Toby's life and knowing that there is nothing to do at the time about it I just tuck it away for another moment. There might be things that will make me sad but wont be things that I can do anything about until Toby is much older. So I just tuck that tidbit of information and put it away for maybe another time to be sad. (since it wouldnt be appropriate to cry in a store...say...like IKEA! :) I truly believe this is a survival mechanism God has given me to help control those moments of sadness that seem to come at inopportune times. I'm sure some of you other mom's must know what I'm talking about. The moments at playgroups or walking around th...

I'm sure any mom can undertand this. You think your day is going well. There might be one small issue going on but nothing big. You're sitting around and decide to call up the ______________ (fill in the blank: doctor, therapist, orthopedic specialist) to mention what you seem to think is a small issue. That's when everything changes. Your small issue turns into something much more serious then what you thought. You go from the mom who has it all together, to the mom who doesn't have a clue what's going on. Not what I would consider a fun time. As I've said before we are on vacation right now. It has been pretty uneventful concerning Toby. Especially for being at such a new point in his life with really pushing for walking and other things. About four days ago Nate and I noticed a small red circle on the back of one of heels from his KAFO'S (leg braces). I thought, no big deal, leave them off for a day or two and it will be better and we will put the braces...

Today we returned to Greenville, South Carolina for the first time since Toby was 2 months old. Greenville holds some incredible memories for us. It was where we went to college, where we had our first apartment, first home, first child Gracie was born and where we found out about Toby's diagnosis, gave birth to Toby and spent four long weeks in the hospital with him after birth. This is where people rallied around us, prayed for us and supported us. This will always be considered my home to some degree. I am reminded of all the incredible people we had in our lives while we were here, some that we still keep in contact with and some that we will most likely never see again. God used so many people in our lives through those months I could not imagine mentioning them all, but I do want to mention a few. I believe that looking back at times like this can truly help us see the goodness of God. There was Dr. Greig who was the one who first broke the news of Toby's Spina Bifida. He...