Update on Rachel

I know...It has been a LONG time!! I got out of the habit of blogging and then it just seemed too much to get back in...
I will just pick up here...

Rachel is scheduled for surgery on her feet on August 30th. She will be having an Osteotomy and work on her feet. We are not sure what all will need to be done to her feet yet...

Most Spina Bifida kids do not have a lot of control from their hips down, so to wait until they are three is no big deal. Rachel has great control/ function to her knees. From her knees up, she is like a normal two year old...below her knees are different story. So, it will benefit Rachel to have her surgery sooner rather than later.
At her doctor appointment back in February, they wanted to do it at the beginning of Spring (May?) and then she would be in a cast for around 6 weeks. Here in NW PA, we have terrible weather for 9 months of the year and then great weather for only a few in the summer. I really did not want Rachel to be in casts while the other kids were playing outside, going to the beach, swimming...you get the idea. Plus, we can get really humid weather here too, and we do not have air conditioning...It just didn't seem fair to Rachel. So, I asked if we could push her surgery out until the fall. We got a preliminary pre-op date (for testing, X-rays, things like that) in late August. Well, the last time we saw her team, they really felt the surgery needed to be done sooner rather than later. With Spina Bifida, there is no easy fix. So, although Rachel is wearing bracing to help keep her feet straight, those braces are also causing skin irritation and bruising.
Well, her team at Shriner's here in Erie also has concern that her feet problem is not being caused by a tethered cord (Hard to explain, but picture it with me: Her spinal cord -where her defect is- flying around and attaching to something in the column. Surgery would be needed to correct this.
So, we are going to Pittsburgh a little early to get the tethered cord ruled out.

Ugh! This is not the most eloquent post I have ever written, but hopefully you get the idea of where we are right now.
Two prayer concerns (three):
1. Rachel does not have a tethered cord...that the problems in her feet are only caused by her growth.
2. Rachel's surgery: that it goes REALLY well and that the date gets changed to an earlier date. August 30th is the kids' first day of school, and I hate the thought of not being here to get them ready and on the bus, getting the pictures and all of that. The surgery schedule was full: it was Aug 30th (which was a cancellation) or wait until November...:)

The Stuff True Love Is Made Of...

Yesterday I came across my first crush on the Internet. Ok, it was on Facebook. I know a lot of people have gotten themselves into trouble through the Internet, but let me tell my story.

When I was in 4th grade, I was IN LOVE with a kid named Chris. He was SO CUTE, but more than that, he was nice. It was a crush. Fast forward 30 (give or take) years...

A friend had him as a friend on Facebook. I looked at his (locked) profile and all I could see was his picture. He is still just as adorable as ever. Can you really call an almost-40-year-old "adorable"? Well, if you can, Chris fits the description.

When I saw his picture, all those 4th grade butterflies came back. "Oh, he's so dreamy!"

I logged off the computer and went right upstairs. The first thing I did, was tell my husband...EVERYTHING. I don't have plans to cheat or leave my husband, but it always starts with a little something left out. So, I always make it a point to have full disclosure with John when I see and old boyfriend or have a dream about someone...just to be SAFE.

Here's the point:

As I was going to sleep, I started to think about Chris, and believe me, all I have to go on is a picture. I have no idea where he is, what he does, if he has kids, if he is a believer, if he beats his wife. But as I was going to sleep, I was wondering these things, and found it VERY easy to imagine him happy, in a great job, and still just as nice a guy as he was in 4th grade.

I started thinking that it would be very easy to walk away from my life and step into his.

But here's the thing, Chris hasn't seen me and my bed head, or when I've not showered in days, or when I am *super* cranky. He wasn't there and held my hand as my daughter went through surgery. He didn't hold me as I wept when I found out my daughter's feet don't work. He doesn't really have a history with me. He doesn't know me, and I don't know him.

This past Valentines Day, I was up at 3am cleaning up puke. Guess who was right beside me cleaning up the puke? Not Chris. It was my husband, John.

Yes, this life I have is full of a lot of stress and strain, but it's the life I have, the life I have **CHOSEN** to walk...with John.

Cleaning up puke at 3 am is not glamorous, but it is the stuff true love is made of.

Things I've Learned from Spina Bifida

As I was putting Rachel down to bed last night, I realized that her AFO's needed some adjustments. The velcro was coming off; the moleskin was wearing thin; the straps needed some trimming. So, I sat down to do the work of refurbishing an AFO, and I realized, this is something I couldn't do "before".

In many ways, my life has been sliced right down the middle, now marked by "before" and "after".

Now, I can refurbish an AFO. I ever KNOW what an AFO is and does.

Now, I can tell you what "Myelomeningocele" means. Heck, I can even spell it without looking it up.

Now, I can insert a cath, at least for a little girl.

Now, I can rearrange my schedule to fit in four therapy sessions week.

Now, I can fully explain Hydrocephelus, a VP shunt and tell you the signs to look for a malfunction.

Now, I do a butt-flap.

Now, I can get in three massages on little toes that don't wiggle.

Now, I think ahead and make sure there will be a cart (store) or take my stroller.

Now, I know that sneakers are really the only shoe option for my little girl. No cute little sandals or little ballet flats.

I know to find shoes that fit well over her AFO's.

Now, I can put on a rhino brace for the hips. (And by the way, wouldn't it make more sense to call it a "hippo brace"?)

Now, I can laugh.

Now, I can be thankful for life.

Now, I can praise God for everyday gifts.

Now, I can find beauty in the malformed.

Now, I know that life is more than feet that work.

Happy 4th Birthday J-MAN!!!!

Dear Joshy,

Today you are four years old! Where has the time gone? Is seems like just yesterday that you were a sleepy little baby, and now, you are a "Star Wars boy", always saying something to make me laugh or smile!! I love you!!!

January Blah's!!!

These are a few of my favorite things (that help me get through this dreary time):

Rachel's Latest Appointment

Yesterday (Monday, January 11), Rachel had a "routine" appointment with Children's Hospital of Pittsburgh. About every 4-6 months, we take her to the Spina Bifida clinic down there. If Rachel needs any testing done, it occurs in the morning, and then all afternoon, we sit in one room and her many doctors visit her to see how she is progressing.

A year ago, Rachel underwent all of her Urology testing. Everything seems to be working well, but we need to check just to be sure. That is not something that we want to miss. So, in the morning, she had a renal sonogram, an X-ray of her bladder/ kidney area, and then some blood work done.

Even though we have no reason to doubt and Rachel has not had any urological problems, I always get a bit nervous. There certainly COULD be a problem. But, thank God, all of her tests came back clear, and we don not need to see Urology until next January.

All of her other appointments went well; Neurosurgery and Physical Medicine do not want to see her for another six months.

And, we got in and out (including the tests in the morning) in about 4 hours. That's NEVER happened! Usually we are there about 8 hours.

Thanks God for a great day!!!

God's Grandeaur

(view from my front door)

It's very easy for me to see the glory of God through nature in the Spring, Summer and Fall, but I struggle with Winter. I HATE snow! I hate to be cold! I hate to go out in it, to be bundled up and rush from one warm enclosure to another.

I know, I know, I know...I live in the SNOW BELT! In fact, I live in the snow belt of the snow belt! We get so much snow, it is sickening! When the national news covers the bad weather areas of the country, it is ALWAYS my neck of the woods here featured. It often starts snowing here in October, and we don't see green ground until May. (This is beside the point I am trying to make, but each year my undiagnosed SAD (Seasonal Affect Disorder) seems to get worse and worse. Right after Christmas (like the day after) I get in a funk and can't shake it until sometime around May, April if I am lucky.)

So, my first point is...I hate snow! My second point is, I am struggling to see God's Glory in it all. I know that creation screams his presence and his praise...but really...through snow?

Those of you not afflicted to live in a "tundra" may think, "It's so pretty. It's so white and pure." Well, you spend some 6 months seeing only "white" and then let's talk! I feel so far from God, lost in this "Narnia"... I really wish we humans could just hibernate like the animals; it might even help my figure!

As I drove home today, I was thinking that I won't have warm weather until probably June. Truly folk, I cannot plant my garden until AFTER Memorial Day...

So, I was driving home, thinking about how long until it's all gone, then I had another thought...FROSTING!!! The snow/ ice looks as if everything is frosted (as in, the kind you can eat). Now, I LOVE my sugar, namely frosting. That is my number one weakness. Ice Cream for my husband, chocolate for my kids, frosting for me...

As I started to look at it all through fresh eyes...God loves his frosting too. And I guess he must REALLY love us here in NW PA, since He's given us an extra portion! Crazy thought, I know, but it keeps me going...Whatever works, right?