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Showing posts from November, 2009

WOW OH WOW OOOOOOH WOW!!

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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

The women who write blogs

Well, everyone is sick at my home, which means everyone is taking a nice long nap. It's cloudy outside and I'm avoiding the laundry. Nate is sitting opposite me writing on one of his books. (It's starting to get ridiculous! : ) But I'm proud of him.) So I feel inspired to write on my blog. I always tell him that writing a blog is so much better than writing a book. I don't have anyone telling me to change my grammar or that I am being too wordy. I just write, instant gratification. : ) Today I feel truly sad. The internet can be such a wonderful place of encouragement and insight, but it also opens the door to sadness. I have so enjoyed being on the BabyCenter website support group for Spina Bifida Kids. It has been more encouraging than I could have even imagined, and for that I am thankful. Today I went on (hadn't been on in a while) and found out that a sweet lady on there has lost her baby girl. She was a baby with Spina Bifida who was going in for a shunt

Full Circle...and reminded once again How great my God is.

Well, it sure has been a while since I've been on here. Don't worry I'm still planning on keeping this up. You see, my problem is I have an incredibly rebellious nature. I know shocking, right? Well, it was recently told to me by an extremely close friend that I am a private person. (that is except for my blog) Well, being the rebellious person that I am, I just didn't feel like sharing all that much on here. If I was going to be a private person then I might as well be a private person all across the board. Why have one venue in which to share, right? Well, wrong and selfish, so therefore double wrong! (The comment by the way was not meant to be an insult in any way shape or form, and I completely understand that. I was being sensitive.) So here I am coming full circle realizing that I might be viewed certain ways even by close friends, but that doesnt mean that I need to stop doing something that has been an outlet for me. A truly wonderful way to open up without havi

So...the appointment.

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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

Tomorrow is well...tomorrow.

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'

Toby's Bike.....

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This is Toby. This is Toby's bike....Well the bike we want Toby to have. Weve heard about these bikes for at least a year now and have really wanted to get him one. The problem is they are not the normal bike price...to say the least. We are working on raising money for this bike for Toby. It uses hands instead of feet to petal. It helps with balance and strength and honestly it just looks like fun. One of the hard parts of Toby's life is just trying to keep up with the other kids. He does an incredible job when crawling, but since we are really trying to work past that he's been getting frustrated. I really believe this could help encourage him to keep working. well, I got online looking for a used one...no luck. Then I found this website www.adaptivemall.com They have what they refer to as a Kiddiepool. You put in a request for a piece of equipment and people donate towards it. I am so excited about this. Nate and I have been working on a garage sale to help raise money t

The Miracles

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

Our Story...Back to the Beginning III

This is just a continuation of two previous "Our Story" entries, so don't read this until you've read the earlier ones. As we walked out of that small room into the open the nurses all stopped what they were doing and tried to give encouraging smiles and sympathetic looks. How little I knew that day how much I would come to hate those sympathetic looks. Dr. Greig walked us to the front and we made an appointment for the next week to ask questions and get some answers. We opened the door and walked into the waiting room where all the happy pregnant women and their husbands sat awaiting their appointment. I felt like I was branded with the word "defect" and somehow everyone knew and could tell. My heart ached like I have never felt before. A guilt that is indescribable came over me. Flashes of mistakes that I had made ran through my mind. Missing prenatal vitamins here and there, eating junk food, drinking coffee. I had no idea at that point how often I would

Toby Walking

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!!!

Thank you

I just wanted to write this real quick because it was on my heart and I wanted to share. I have been shocked to hear about so many of you who are reading this. There are people from our church, people from support groups, facebook, family and friends. There have been so many of you who have shared words of encouragment and understanding with me. Thank you. If it were not for the encouragment of others I don't believe I would take the time to continue sitting here to write. God has been so good to us and to me personally. Your words of encouragement have been such a huge help to me. I really wish I could explain it to you. Every time someone sends me a note or stops me at church to tell me that they read something, it means the world to me. (You all know who you are.) God is using you and your words to show me His grace daily. Please keep on commenting, keep sending me notes, keep stopping me on the sidewalk. I am so thankful for each and every one of you. If you'd like to recei

Our Story...Back to the Beginning II

This is just a continuation of the previous entry..... so don't read this until you've read the first part of the story. Nate was working at a car dealership at the time and he got off work to make sure he could go to my appointment with me. I had no idea that walking through those office doors would change my life forever. The nurses were incredibly kind and were talking happily and telling me all the things they were seeing. Then they became quiet. They were still friendly, but they kept looking at the spine and taking pictures. Then the big giveaway happened. They moved me and my husband to another room. They wanted to get better pictures of the baby on a 3-D ultrasound machine. I kept telling Nate that something was wrong. “It’s taking too long.” I said. He just patted my hand and told me to wait to see what the doctor said. Then another giveaway. The doctor came in and kept patting my leg and asking me if I was okay lying down while they were doing more pictures. I said I

Our Story...Back to the Beginning

I wrote this a couple years ago. I wanted to start keeping track of everything I felt and everything that went on during the beginning of our new normal. I know that some of the women reading this blog are pregnant with babies who will have spina bifida. I wanted to share my story, especially for you. “Don’t worry. This is just a precaution. We are sending you to a specialist. I really don’t think anything is wrong.” All of these words were said to us by our sweet Doctor Price after my eighteen week sonogram. He explained to us that something looked funny about the baby’s head, but everything else looked great. The doctor only thought the baby’s head looked flat on one side because of the way he was positioned in the womb. For safety’s sake only, we were sent to a specialist in fetal monitoring. We had the sonogramist write on a piece of paper the sex of our baby and seal it in an envelope. We wanted to find out by ourselves. My husband was hoping for a boy, and secretly I was too. We