Friday, January 28, 2011

Opthalmology update

So, we went back to the local eye doctor yesterday. She has an appointment in Rochester in April, but I have been seeing far too much squinting and head tilting to wait that long. She has needed to have her eyes dilated so that he could get a good look at her optical nerves, but since the seizure that was a no- go. Things like that can increase blood pressure, cause a child to pass out, and then a seizure can occur. I talked to her neurologist about it though, and she said that those chances were very slim and that I should go ahead, because we need to find out about the condition of her eye. I agreed wholeheartedly....but that didn't make me any less worried!!

I explained to her that the man was going to put a drop in each eye and that it was going to hurt and make her vision blurry. She was nervous, but ok. Then he came in (an assistant, not the doctor), and I asked him how long it would take to wear off. His answer- "Sometimes two minutes, sometime two days. Now hold her down." Um no. My already unstable on her feet child can NOT have blurry vision for TWO DAYS. That's unacceptable!! So I told him I'd like to wait and talk to the doctor about it. He was visibly annoyed...oops. The doctor came in and told me he was planning on using the fastest acting eye drop on her, and that her vision should be mostly normal by the end of the night, and then back to normal in the morning. He also apologized for the other man- he had been standing right outside the door. I held her down while he administered the torture drops, and we went out to play for a while. Oh my, she was like a drunken sailor. Her vision being blurry upset her at times and made her giggle at other times--- she was just off the wall.

Finally, it was out turn to go back in. She hates bright lights, and he has to use a very bright one ( think flood lights) to see her nerve. So she squirmed and cried and kicked the chair. MY CHILD IS STRONG!!! I could barely hold her, but he did get an "ok" look.. Here's the surprise. Her nerve looks perfect. Her eyes are both farsighted, at 150- but he said that it's normal for a child this age and he wouldn't give glasses for it. So, now we are both left wondering about the visual field cut. Since her nerve is perfect, the field cut is unexplained. However, she definitely turns her entire head and strains her eyes to look at anything from a distance. Thankfully, yesterday he was able to see her do it. Now he knows what I'm talking about and that I'm not completely crazy. The only thing he can think of is that she started doing it when she first began to get her vision back and so her brain has trained her head to turn to look farther away. It's definitely not the definitive answer I wanted, but I guess it's better than something being terribly wrong in her eye. So, we will just keep an eye on it and if it gets worse, she will go back, but otherwise, we are good for 6 months.

Some pictures from yesterday:

 She thought it was hysterical when I told her that the thing in the middle is the way a phone used to look "Mom, you're a silly willy nilly willy!"
 "Grace what do you see?"
"A hot balloon"
Which sounded like " a dead baboon" with her mouth crushed up. So funny.

 "Oops, Mom I fell. Where's the floor?" After her eyes were dilated.

Thursday, January 27, 2011

Get thee behind me

I have been discouraged lately. I mean really discouraged. This is hard. There are so many times that I sit in a room full of my friends and family, and I feel like I'm all alone. Grace attends Sunday School, children's church, and a Pee Wee class at our church. This past week, we started Teaching and Training classes at church and so Grace now attends King's Kids during that hour. All of her teachers are amazing. They are people that I have looked up to through out my Christian life, and I am beyond thankful that she is being taught by each of them. However, I find myself wanting to just keep us at home. I feel as though she is a burden to her teachers. A hindrance to the class. She doesn't sit still. She doesn't seem to pay attention. She loves kids and playing with kids, but when she gets around too many at a time, she doesn't really know what to do. Her little brain lost all of it's inhibition receptors when she had the stroke, and so if she sees one child jump up and down, she automatically thinks it's time to do just that. Then her brain forgets to tell her to stop. So she continues to jump up and down. There is a good chance that she has TRUE attention deficit disorder, a REAL disease that has become so mainstreamed that it's almost a joke. So, I have options. I could put her on more drugs. I could do that.   I mean, really what's one more?

I could take her out of the room and spank her, every single time that the neurons and synapses in her brain don't fire exactly right, and she does something naughty. As a matter of fact, I have done just that for the past year. I can yell at her, more than I already do, and expect that to bring results. Her neurosurgeon has likened her brain to that of an Alzheimer's patient.Can you imagine pulling down your grandma's pants and spanking her when she forgets?  Well, that's basically what I have been doing to her for over a year. I'm not saying she doesn't ever deserve to be spanked...she has MANY times when she is willfully naughty. She also has many MORE times though when she just doesn't understand. Or even worse for her, she does understand, but her brain just can't make her feet sit still.

I guess I don't even know what the point of this post is. It's hard to walk into a room full of other kids and have your child be the one off in the corner, playing by herself. It's hard to go to church on Wednesday nights and know that she looks so forward to her PeeWee Club, yet I dread it. It's hard to paste a smile on my face and say hello to people after my daughter has been called "Dum Dum".

Well, I wrote all of that ^^^ this morning. I considered just completely deleting this post, but I took the time to write all of it, so obviously it needed to be said. For me. Since then, I've taken Gracie to her eye doctor appointment and had some one on one time with her. On the way home, we were listening to a CD with the song "Where He Leads, I'll Follow". She piped up from the back "Sweet are da promises, kind of like the Word" in her adorable voice. I asked her where she knows that song from ( she sang it in the car last night too), and she said she learned it at her church. We kept listening to it, me with tears streaming down my face.

"List to His loving words, “Come unto Me”;
Weary, heavy laden, there is sweet rest for thee;
Trust in His promises, faithful and sure;
Lean upon the Savior, and thy soul is secure."

I know the answer to my problem.  Doesn't make it any easier, but I do know the answer.

Tuesday, January 25, 2011

I am the mother of a disabled child

I am the mother of a disabled child. 
I have a handicapped parking tag in my car, and although we often get odd looks, we have to use it.
My daughter is 4.5 years old and can't sit still for more than 2 minutes.
At least once a month, I spend 2-3 hours on the phone, making doctors appointments.
I am the mother of a disabled child.
When we leave home for the afternoon, I'm not worried about remembering snacks and extra clothes. I'm worried about remembering Diastat in case of a seizure.
The sound of my phone ringing in the middle of the day often causes a mini panic attack. 
As does the sound of an ambulance, even when my children are right there with me.
I am the mother of a disabled child.
And I am Blessed beyond all measure because of it.
Being the mother of a disabled child has ENABLED me. 
It has enabled me to see that pain in other mother's eyes and hear that despair in a voice.
It has given me the courage to say "Is everything ok?" "Do you need to talk?"
It has enabled me to pray harder and love deeper than I ever even knew was possible.
It has taught me to truly treasure life and all it has to offer.
There is true joy in watching the light bulb go off in your child's head. Seeing understanding for the first time is priceless.
I hold my breath as she tries to open the tiny clasp on a toy, and clap my hands and let a little shout when she gets it. Others probably think it's you, it's almost like those first steps all over again.
I have a desire to learn to love the unlovely.
I have learned that there will be situations that NOBODY will understand. That I will feel completely and utterly alone. Afraid. Tired. 
"Be strong and of a good courage, fear not, nor be afraid of them: for the LORD thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee."
"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness."

I am the mother of a disabled child.
It is no accident.  
He chose me. 
He loves me. He loves her. And I love Him...a lot more because I am the mother of a disabled child.

Wednesday, January 19, 2011

Orthopedics update

Well, I meant to post this the other day, but totally forgot. We went to the local orthopedist last Thursday, to see if we could figure out any of Gracie's leg pain. I found out quite a few things!

First of all, he laid her down and did a bunch of little muscle and muscle memory tests and they all turned out GREAT!! He said that her tone in her leg muscles is still high, but that for a child who has had a stroke and has CP, she has done amazingly well. Her neurologist has discussed doing botox shots with us, but this doctor said that that is one of his LAST resorts. He checked her braces and has decided that she needs new ones again. I find this funny, because her feet actually haven't grown much since September! The braces she is in now have a hinge in the heel area. The original brace she was in was just a straight, rigid brace. We will be going back to the rigid brace. Her right heel cord is too tight, and he feels that having that rigidity behind there will strengthen it up. So, we will be heading to Rochester for new braces soon...and also an opthalmology appointment.

We go back in 6 months. He wants to see a 75% improvement in the heel cords by then, and if not, we will be scheduling surgery at that point.

Monday, January 17, 2011

I'm gonna be a bus worker!!

The very first ministry that I got involved with when I began going to church was the bus ministry. I was asked to work it one week as a substitute for someone, and I FELL IN LOVE. So, the next week, I went to another bus meeting, and before long, I was riding the bus weekly. Leading music, loving kids, getting the opportunity to lead children and adults to the Lord---there is nothing else like it. I met the love of my life on the church bus. He was a rider at the time....see how good God is?

Well, anyway, yesterday our Pastor preached on life goals. Back when we were first married, John and I made a goal that we would ALWAYS be involved in the bus ministry, in some way. We knew it wouldn't be logical to say that we would always ride...but we would always be involved. We also made a goal that our children would be involved right from the beginning. We want the bus kids to be our kid's friends. When Gracie was born and in the NICU for almost 5 months, we obviously had to take some time off from riding the bus. Unfortunately, I allowed my fears to get the best of me. "Oh the bus is too cold for her" In the summer. "Oh the bus is too loud." So, we never got back on the bus. Then I got pregnant with Josiah, and if you know me, you know my pregnancies are not the 9 months of glowing skin that you read about. I couldn't step foot near that bus if I wanted to. So, the platn was to get back on the bus when Josiah was 1. Well...strokes happen! So we didn't get back on then either. Our love for the bus ministry and those kids never waivered though. Gracie started talking about being a bus worker back before the stroke. Most kids see the big yellow bus and want to ride it, but she wanted to get on there and work!

This past week, she has talked about it incessantly. "Mommy, when will I be a bus worker?" "Mommy, I will ride the Southside bus." (Yep, she's trained well...Southside girl through and through!!) "Mommy, I will go to bus meetings and bus calling this week?" I had planned on waiting until spring, when it's a little warmer. Then yesterday's message got me. SHE DESIRES TO SERVE THE LORD. Right now. What's that saying... get in while the gettin's good? So, yesterday afternoon, WE  rode the bus. Is Gracie a bus worker? Not on our church record books...she has 9 years to wait to be considered an official "bus worker". God saw the hug she so freely gave to one of our adult riders yesterday, though. He saw those tears in that precious lady's eyes.

Kids, I pray that you will always have this heart. Don't let life or the world harden you. Remember, as a 4 year old child the excitement and joy as you climbed on that bus. "I'm gonna be a bus worker! Josiah we're gonna be bus workers!!"

Thursday, January 13, 2011

It's the little things...

that mean the most!!!

"For the person for whom small things do not exist, the great is not great."

"I am beginning to learn that it is the sweet, simple things of life which are the real ones after all."

"It isn't the big pleasures that count the most; it's making a great deal out of the little ones."

"Life is made up of small pleasures. Happiness is made up of those tiny successes. The big ones come too infrequently. And if you don't collect all these tiny successes, the big ones don't really mean anything."

This may seem like an odd picture to some. To others, those who remember the days of "if she eats anything she can't drink until you check her mouth because she can't feel the food in there and she might aspirate." (Always said in a rush of words, with no breath taken: hence the lack of punctuation, LOL.) Or, "She has her own sippy cup in the bag. She can't drink out of the dixie cups or out of straws, she gets too much and she might aspirate." Or, "She aspirated last night, so her cough is from that, she's not sick." There are countless more that I could write on here that friends (especially Brenda) would recognize, but I'll skip that. 

The other day we were expecting some snow; so like every one else in the tri county area, I went to Wegmans. After we got all the little neccessities, I saw this cute set of plates/cups on sale for CHEAP. I like cheap. As a matter of fact, it's one of my favorite words. Gracie needed a new plastic plate and these were cute, and again..CHEAP. So, I grabbed the plate...and then it hit me. She needs her very own "big girl" cup, because she has gotten to that point. WOOHOO! So, we grabbed the panda cup and off we went. I took it home and explained to her that she had a new cup, but that we would still keep the old ones with the lids for car rides, etc. She was so excited!! She's drank from regular cups many times in the past months, but I still watched nervously as she drank the milk from it. She did GREAT. Juice still gives her a little sputter every so often, but it's nothing she can't clear on her own.

See, it truly is the little things. Let me put it into perspective. Last year, three days after she had her shunt  revised, a doctor came in and told me some of what to expect. Animalistic movements and sounds, that could last for days, weeks, or forever. She wouldn't walk or talk- and if she did, it wouldn't be "normal" by any means. She would probably wear diapers for the rest of her life. Her face would be droopy. SHE WOULD NEED TO BE TUBE FED, because the stroke affected the part of her brain that tells you to swallow.

To some, it's just a cute cup with a panda bear on it. To us, it's one more of the little things that make up the HUGE things. God has been good.

Tuesday, January 11, 2011


Gracie has been wearing AFO's (braces) on her feet up to her knee since January of 2010. She has a love/hate relationship with them...some days they help her a lot(such as in the snow). Other days, she comes home from school with welts on her little heels and bruises on her ankles. I made a deal with her, back in September- she only has to wear them on school days. So, Saturday and Sunday and any time we have to make a trip to Rochester (unless we are going to see the orthopedist, of course) she gets the day off. It's funny...she hates those braces, but she loves school more. Yesterday was quite the day though. I asked her to go bring me her shoes- my first mistake. Of course, she
came back with her black church shoes. So, I told her it was a school day and she had to wear her braces. She gave me that look. If you have children, you know the look I'm talking about. I think I even have it caught on camera...yep, this look right here.
Being the mean mommy that I am, I told her that she had to wear her braces, that it was a school day and it was snowy and slippery outside. She brought them to me, under duress. Here's the conversation we had as I squeezed the torture contraptions on her.
G-"Mommy, they hurt my feet. I don't want to wear them today.
M- Where do they hurt your feet?
G- Ummm, on my feet. ( Said with a slight eyeroll and voice inflection that leads me to believe she thought I didn't know where her feet were.)
M- But which part? Does it hurt here, or here?
She points to her heels and her ankles. 
M- Well we are going to a doctor on Thursday that will be able to help with that. 
G- (Big smiles and claps her hands) Oh good!! (They must really hurt her.)
G- Mommy, can I wear my black shoes today?
M- No, honey, today is a school day. You wear your other shoes on Saturday and to church on Sunday.

I can see the wheels in her head turning. She gets the sweetest little grin you ever did see on her face and says-
G- Mommy, I'll go to Sunday School today. I NEED to learn more about God. PWEEASE?"

Ugh, she was so cute, I almost caved!

 As I said, she does have an orthopedist appointment coming on Thursday. This is a local doctor that we haven't seen before, so please pray that he might be able to help her in some way. It is truly heartbreaking to have your child wake up, night after night, crying because her legs HURT. The hardest thing is, she doesn't wake up completely, so we can't even give her any Tylenol or anything. Botox injections have been considered in the past, this might be the path that we go down next. We shall see on Thursday!!

Sunday, January 2, 2011

Happy New Year!!

Wow, it's hard to believe that 2010 is actually over and we are 2 days into 2011! What a full year it was for our little family!! I was thinking about it yesterday and realized that both of our kids learned to walk, talk, run, and jump together this past year. What a joy and privilege it has been to get to watch God's hand as He has worked in all of our lives! We wish you all a wonderful 2011!

Some picture memories of 2010

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