Wednesday, December 30, 2009

My most recent project

I know..its always something with me. But I've got a new project right now. I've been working on for about a week. give or take a few days.

www.spinabifidakids.blogspot.com there is a link on the right of my blog.

Im super excited about this because I think it is NEEDFUL! It is so hard to sit and google tons of information regarding spina bifida and all the MANY MANY areas of these kids lives.

I am hoping to have others contribute ideas and for it to slowly start growing into a site that is easy to search and easy to find ideas.

It is also a place for all the SB blogs out there. SO you can see how these kids are doing and how incredily strong they are.

It is also a place for people to donate used medical equipment like walkers and such.

Anyway, check it out when you can.

Saturday, December 26, 2009

Toby's Bike

So, thanks to some incredibly generous people we were able to give Toby his first bike for Christmas this year. It was soooo exciting. I will admit that at first he was more excited about his bike helmet. (for some reason he attributes helmets to being a big teenager.)
I love this video sooooo much. In the first 2 seconds you can hear Nate talking to Toby in the background, "Never give up." Then later on you hear Toby tell Gracie,
"I'm gonna beat you"
I just love that we went outside and the kids got to ride bikes together. HOW AWESOME!! Just wait till Milo gets bigger and gets his first bike.
I am just so incredible thankful. sooo increidbly thankful.
One day I hope that Toby can look back on this and truly understand how many people love him. For now, its just a totally awesome bike with a totally awesome helmet that makes him look like a teenager. : )

video

Tuesday, December 15, 2009

The Kindess of Strangers

This entry is really supposed to be about the kindness of strangers. Hence the title, right?
Well, I have to preface it with what happened last night.
Toby walked around a store for over an hour with no breaks!!!
Nate had Upward Basketball practice and so I was left with three kids and Christmas shopping to finish up. I've been really wanting them to pick things out for each other this year so they can be focused more on the giving than the receiving. Well, we went out and I brought the sit and stand stroller and Toby's walker. I was feeling pretty stinkin' daring if you ask me! So of course in the process of going into the store, the walker slides down the bar that I have it hooked on and smashes right into Toby's wrist. He cries and I'm feeling quite bad about it. Well, I decide at that point I might as well say goodbye to him walking because his wrist was already looking rough. We got in the store, and I started walking and Toby yelled out, "Hey, you forgot about me walking?" So I got him out and helped him into his walker. He was getting frustrated about his speed, or lack thereof, when this lady walked up to him. He was totally in her way. Instead of scooting pass him or doing the opposite-getting up in his face and patting him, she just smiled and said, "Hey big man, how's it going?" For some reason this stranger totally helped Toby get out of his funk. He told her about his boo boo and told her about how he cried and how he can walk now. She just stood there and listened like she had all the time in the day. Pretty awesome around the Christmas season. Okay that was stranger 1. So after walking around for an hour, dropping things, Toby has fallen twice at this point, and Milo has gotten pretty fussy. I decided it was well past time to go. So we headed to the front of the store to pay for our items. As I was making my way to the door, this guy comes out of nowhere practically running to get to the door before me. (Now, some people will hold the door for me, but then you can see the look on their face when they realize how long it's going to be before Toby actually makes his way all the way through.) Seriously, this guy must have just been waiting for me to leave, because he just stood there smiling like it was no big thing. Then his wife came out and asked where I was parked so they could help me to the car. This makes stranger number 2 and 3. I told them that I was okay, but thank you anyway. Then of course, Toby, who has already accomplished incredible things that night decided he wanted to step off the curb for the first time. Stranger number 4 came flying out the door of the store and said, "Hold on, I'll move my car. That will make more room and be easier." (He was parked next to us.) So he threw his stuff in his car, waved at Toby and backed out quickly just so Toby could step off the curb safely. Then, back to strangers number 2 and 3. They proceed to stand there and wait for me to get safely in the car with all my kids, the walker, stroller and of course all of our goodies. They waved and left.
These people were just strangers. People that I will probably never see again. But wow, how they changed my night. I have noticed in the past week, (the closer it gets to Christmas) that people in general have been much less willing to wait patiently as we cross the street or move out of Toby's way as he tries to see a toy on a certain aisle. People have been consumed with their lives, their schedules and their happy holidays. It has made going out with Toby, Gracie and Milo a little harder this year. However, last night was different. Those four strangers would have done a backflip if I had said it would have made our lives easier. They went above and beyond any general kindness. I am so thankful for those people. Thankful for the people who forget about themselves and just plain pay attention to the needs of others.
So here's my small challenge from this post. (myself included) Pay attention to the needs of others as you are out and about. It's so easy to be caught up in the good we are doing for church members, family and friends that we can forget about the person on the same aisle as us in the store.

Tuesday, December 8, 2009

ER...

So, it had been almost 3 years since our last Spina Bifida-related ER visit. Not bad!! After so many ER visits the first few months of Toby's life I just thought that it would be that way on a regular basis. But here we are almost three years later. Praise God!

Toby had been waking up at night crying randomly and complaining of his head/neck hurting. I didn't think too much of it because it wasn't incredibly consistent. I decided to call our Spina Bifida nurse, and of course it was the usual, "Take him in if he gets any worse." Well, nothing happened Friday, and then Saturday it seemed like all night long. I ended up putting him on some pillows in the living room and sleeping with him out there. I was hoping to keep the rest of the family sleeping.
Well, we went to church and afterward he started telling me he was crying because of his shunt, and that it was hurting during Sunday School. Well, that was enough for me. I nursed Milo, got everyone settled in and Toby and I were off to the ER.

I can not be more thankful to God for how the night went. We had our rough moments, but it could have been so much worse. Toby was truly a champ!! He didn't cry when they put the first IV in. The second one was his undoing.(the first one clotted) Then we went up to CT. About a month ago when we did one he cried his eyes out. This time he said, "Wheeeee." and asked to do it again. The CT guy was nice enough to give him a little ride on the table. Then off to X Rays for a shunt series and again he did awesome. He even told me to stop holding him. He wanted to do it on his own. It was incredible. Then the X ray lady let him play with the dials on the machine. He told her he was going to be a Doctor when he grows up.

After all this (And not eating or drinking because they wouldn't let him), Toby was still a pretty happy camper. Granted he got to cuddle up with Mommy and watch TV most of the afternoon. Then came the results and our neurosurgeon Dr. Tullous. It seems like the pressure that they had adjusted about a month ago was too high for Toby, which was causing the headaches. Once they realized this did not mean surgery for Toby, they brought in dinner. Yeeeeaaah! I am so thankful to whoever came up with the magnetic shunt. They were able to adjust the preasure in about 3 seconds with a simple magnet. INCREDIBLE!

We aren't incredibly sure where we are with all of this. Toby hasn't woken up crying anymore and hasn't complained about his head hurting. However, the doctor warned us that it doesn't mean we are done. We are going in later this week for another CT scan. Hopefully Toby will think it's fun again.

So that's where we stand today medically speaking.

On the flip side. I hate leaving my other two behind for things like this. I am usually exhausted after days like this, but then really just want to spend time with Gracie and Milo. I am so torn between cuddling Toby up because of everything he just went through or throwing Gracie and Milo in my lap and never letting them move again. I really struggle with this aspect of our life. It is a constant battle of balance for me. I am so exhausted that I just want to sleep it off, but I want to make sure my other kids feel loved and important. Monday afternoon, during what was supposed to be nap time, Gracie and I went to Sonic for a quick drink and some talk time. It was nice and much needed. I can't believe how much she is growing up. I wonder how much things like this affect her and how much of this just seems normal to her. I really wonder what to tell her and what to just leave alone. Of course Milo has been able to nurse pretty much whenever he wants and get cuddled. It's hard to balance everything. Really, Really hard. But I'm learning. Slowly....very slowly.

Just another aspect of having a child with special needs. It doesn't just affect the child with the disability. It really is the whole family.