Procedure today

Some people have a life verse from the Bible. I have a life chapter, LOL. Of course, I do love to be different. It's amazing though, that every time something is going on in my life that causes me fear or distress, I can go to Psalm 27. He always shows me something there! Today, He has led me to verse 6. Sometimes, it truly feels like a sacrifice to be joyful, but God asks us for sacrifices of joy, and for us to still sing praises to Him. Even though I am scared today, I will continue to sing praises to the One who already knows the outcome.                                

If you have read this blog in the past, you know that Victory in Jesus is very a special song to me.  I've decided that I will sing this song today, to remind me that He is always victorious.

A note about the procedure that I will have today. It is called a LEEP procedure, and I have had them done in the past. This isn't the first time I've had abnormal cells, it's just the first time I've had them along with elevated blood tests. Previously, the abnormal cells were rated a stage 1 abnormal, and these ones were rated stage 4. The procedure I will have done today is not painful, but does cause pain afterward. I will not need to be sedated, just some local anesthetic will be given, and I'm sure I will be wishing for more once the pain sets in!! The oncology doctor will be right there to test the cells they get, and they will remove all abnormal cells they see right then and there. Then he will test those cells and I will get all of the results, hopefully by Friday. Thanks for praying.

More than I can handle??

"There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it."
Have you ever noticed that when people are going through struggles and trials, this verse gets quoted a lot? Or actually, misquoted and misinterpreted a lot? Over the past two years, so many well meaning people have said to me, " God promises not to give us more than we can handle", or even better- "Whatever happened to God not giving you more than you can handle?" I'll be honest here. There have been times when I've gotten alone with God and asked Him why. Why was my daughter born so early? Why did my daughter have a stroke? Why does my girl have a hard time walking? Why might I have cancer? Why, why, why??? Is this sinful in and of itself? Asking God why? No, I don't believe so. I mean, Jesus, the sinless One, asked that question why. He asked God why He had forsaken Him. My sin is self absorption. It's not the why, why, why- but the me, me, me!


So back to the verse above. I'm not even sure whether physical illness is included in temptation, but for now I'll just pretend that it is. This verse was written to saved people, God's children. So, I don't take this verse to say "Michelle, I won't give you more than you can handle." I take it to say(very loosely interpreted, LOL) "Michelle, I've already given you more than you can handle on your own. Remember Me. Talk to Me. You can't handle it on your own, but together we can get though it, and your faith in me can be even stronger. I will make a way for you to get through this."

I have been singing this song for the past couple of weeks, quite often. I will just continue to trust God's heart.



God is good!

A post about me

 So, a couple of weeks ago, I started to have quite a lot of pain in my right side. It was pretty bad, but tolerable for a few days. Then, it got so bad that I drove myself to the ER, during a snow storm. I FULLY expected that it was a kidney stone, I have had them before and it is exactly what it felt like. The doctors there took a few blood tests, then sent me for and ultrasound. As I had suspected, she immediately found a kidney stone on the right side. However, she then moved to look at the left side. I've seen that look on a sonographer's face before, the day I was told that Lily's brain was only partially formed. Knowing that I'm not pregnant, I really wondered what was going on in my body. The lady, who had been quite chatty with me before, was suddenly silent. She finished the ultrasound, and sent me back to my room.

Within a few minutes, the ER doctor was back. He wanted to send me for a CT of my abdomen. I asked him what was wrong and he said the ultrasound had showed a large mass on my left ovary. I've had PCOS for years, so this didn't bother me too much. The CT was easy and before I knew it, I was back in my room. That wait was miserable. The doctor finally came back in and told me he wanted to admit me, for an immediate hysterectomy. I was in shock and said no way! He told me that the mass was 16.7 centimeters and had cut off blood flow to my left ovary. The chances of cancer were high and they needed to remove it immediately. I asked if he knew for sure it was cancer, and of  course, they had done no biopsies or anything. So, I said I was going home and that I would call my own doctor. I had a ton of instructions and I had to sign papers stating that I wouldn't hold the hospital responsible if anything were to happen.

Fast forward a few days. Gracie got sick and was put in the hospital in the midst of everything. On the Monday after my ER visit, I went to my regular OB/gyn. He wanted to do an in office needle biopsy and blood work. The Ca-125 came back high. So, we sat on pins and needles again. On Sunday night, I was feeling perfectly fine, just a little more drained than normal. Suddenly, I realized I was bleeding, quite badly.On that list of instructions, number one was to return to the hospital with ANY bleeding. So, off I went. I got there and it was BUSY!! They stuck me in a room, put an IV in me and then did nothing. Finally, the same doctor I saw before came in. He ordered a blood pressure check- both sitting and standing. Wow. What a difference an hour can make! When I got there, my BP was a very normal 117/68. At this point the sitting BP was 89/56 and the standing was WAY lower. The nurse, who knows me as "Gracie's momma", looked quite concerned, and got me back in the bed immediately. I had to go for a CT with contrast, so I drank some NASTY stuff, and then I was basically knocked out from morphine. I woke up about 4 hours later to the doctor calling my name. I barely even remember having the CT scan or anything. I do remember when he injected the iodine into my IV, because I was mortified. It gives you a warm, fuzzy feeling all though your body...AND it makes you feel like you wet your pants!!! When I did wake up, the doctor had every intention of admitting me to the hospital. I even had a room number. Then I told him I was scheduled to see a specialist the next morning, and he sent me home. He said that it would be 2-3 days before I couldsee him inside the hospital, so he would send me home with strict orders to make my appointment.

Anyway- I'm tired of typing, so here is the condensed version- the hospital had to give me 2 units of blood. The next morning, I found out that the mass had gotten 6 cm smaller. The doctor did a needle biopsy and was able to get clear fluid from it easily. This test came back with level 3 precancerous cells, and the Ca125 came back higher than the first one. I also had a level 4 pap smear, which means abnormal cells there as well. This coming Wednesday, I will go in for a LEEP procedure. The doctor will go in and get scrape the abnormal cells out. Those will then be immediately tested, with both a radiologist and oncologist standing by. The specialist I see is about 95% sure that there is cancer there and he will need to remove the entire cervix. I'm going to be honest about how I am. I'm tired, in pretty constant pain, and scared. I have hope though. "Why art thou cast down, O my soul? and why art thou disquieted within me? hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God."

God is good!!

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.

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.

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 odd...to 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. 

I AM NEVER ALONE.

"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.

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.

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!!"

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.

Bargaining...

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. 

GRACE DOES NOT LIKE GOIN G TOANY DOCTOR EXCEPT HER PEDIATRICIAN.

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!!

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

 

O, Christmas Tree...

"O Christmas Tree! O Christmas Tree!
How richly God has decked thee!
O Christmas Tree! O Christmas Tree!
How richly God has decked thee!
Thou bidst us true and faithful be,
And trust in God unchangingly.
O Christmas Tree! O Christmas Tree!
How richly God has decked thee! !"

.

 This year has been somewhat tough financially,as it has been for many people. So, when time for a Christmas tree came and they were $25 a pop, for a small one, we almost considered just forgoing the tree this year. We didn't have one last year at the hospital and we were fine, right? Gracie and Josiah just LOVE Grandma and Grandpa's tree, though, so when  friends offered us to come cut one down on their property, off we went.

 My friend was somewhat disappointed in the selection she had, but I was thrilled. Our home is not large, and neither is our family (yet). So, to me, a little tree is just PERFECT. It's cute, and to use one of her favorite terms, cozy.

 My friend has 8 boys. The second oldest is cutting the tree down and the oldest hangs onto it. They are such servants.

 Our sweet little tree, with just one strand of lights on it.

 Gracie, putting on her snowman. John bought that snowman the year she was born. He wrapped it up, in tissue paper, and gave it to me, in the NICU. Grace had had a rough day and I had spent the better part of it crying. When I opened it, I started cracking up immediately, and he started to laugh. People thought we were crazy. I turned to the nurse taking care of Grace that morning and said "Look, my husband bought me a snowman with hydrocephalus!!" It might sound unfeeling or strange, but he knew exactly what I needed!!

 "Lights, Mommy, lights!"

 Look at then belly on that kid!! :)

 Our very first family ornament. This year I need to find one with 3 kids and 2 cats. Hmmm.

 My Pastor's daughter and son made this ornament for me. Nathan (his son) has since gone on to Heaven and so this ornament will always remain very dear to me.

A better view of the hydrocephalus snowman. Isn't he cute??