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!