Wednesday, April 29, 2009

My Maria.....

Wednesday's Walk Down Memory Lane

Come for a walk with me down Memory Lane!
And if you have a "Memory Lane" post, head on over to Scottsville to join in on the fun!



In March of 2006, I went to Honduras, with my church, on a medical mission trip. While there, I met a very special lady.

Meet my Friend, Maria....



She was a beautiful lady who loved Jesus. She never wanted to miss an opportunity, even if though a translator, to hear about Him.

Despite the fact that she was 104, yes 104, she walked to our church services each and every night that week.

She was precious. I fell in love with her and her sweet spirit. She cried when I left, and so did I. She said she didn't want me to go back to the States, but she knew I had to.

Most of us complain if the pew is not padded enough, or if the church is too hot/cold, but my 104 year old friend WALKED to an outside church service every night.

How awesome is that?


=],

Gracie

My Brain Is Dizzy, Part 4.....

We were beginning to see the light at the end of a very long, dark tunnel. FINALLY. Everyday second, every minute, ever hour, every day, every week, and every month that came and went without a seizure brought such confidence to her and to us. It was as if our lungs were beginning to breathe oxygen again.

I eventually went back to work. Kylee was fine with this. I think she may have been tired of having me watch her every move 24/7. I hadn't planned on it, remember, but God had other plans for me. I love that He knows what we need, when we need it. I received a wonderful offer to come back with a promotion and a raise. =) God is good.

We saw the Neurologist in April of 2008. He had told us there was a possibility she could outgrow her seizures, but since he didn't know the source he couldn't tell us for sure so he repeated her EEG.

He also had told us he may consider a trial off her medication to see how she did. He said he wanted to do it in soon so if she failed the trial he could have her regulated again before she started to drive. In our state, you have to be 6 months seizure free before you can drive.

Now, I have to be honest with you, I was not happy hearing anything about a trial off her medicine. We had just gotten regulated and back to a normalcy. I sure didn't want to go back through what we had just been through.

I didn't say anything to him then. I figured when he brought it up as a for sure thing, I would share my thoughts then.

He also told us to watch for seizures as Kylee grew because her medicine is adjusted according to her weight.

She went 16 months, yes, 16 months straight without a seizure. We were so thankful.

August 27, 2008, her birthday, was her next seizure. Nice birthday present, huh? To be honest, we couldn't be too upset about it because we were so thankful she had done so well up til then.

I did wonder if the nightmare was starting all over again. That seizure was due to a growth spurt so he increased her medicine, to the dose she is currently on.

Because she had this seizure, He is no longer considering a medication free trial. Would it be weird to say I was relieved she had this seizure?

I was. I was relieved because I DID NOT want to take her off her medicine and I knew that discussion would be coming up soon. God used the bad and made it good. He's good like that, you know?

Her repeat EEG did still show a large amount of electrical activity.

My baby is doing wonderful. SHE HAS BEEN SEIZURE FREE SINCE AUGUST 2008!

The sassy spirit is back, in FULL force, lol. She is back to spending the night with her friends and going places without me.

We know God performed a work through her. No, He didn't chose to heal her as He could have, but He has used 3 tiny pills a day to control a very frightening disease. He has said "Peace, Be Still" to the storm that was raging out of control. He taught this Mom how totally helpless I was without Him. He taught me to depend on Him, to seek comfort from Him, and to call on Him. He taught me that He loves me no matter how big/small the problem may seem or how many times I question why. He taught me that He can hear each of us pray at exactly the same time, all over the world, yet He hears me as if I am the only one calling out to Him.

He has used her dizzy brain to change me. For that I am thankful.

=],

Gracie

Wednesday, April 22, 2009

A Walk Down Memory Lane.....

Wednesday's Walk Down Memory Lane

Come for a walk with me down Memory Lane!
And if you have a "Memory Lane" post, head on over to Scottsville to join in on the fun!



Our baby, Kylee, who is 12, has always been very outspoken, even from an early age. She has always said pretty much whatever comes to her mind.

When she was 4, we were attending worship service and we just happened to be sitting behind our sweet, humble, quiet Pastor. Let me emphasize the words sweet, humble, and quiet.

During the service, someone in our general area passed gas. When the foul smell reached Kylee's nose, she looked at me and I gave her "the look", you all know that look, and I shook my head, "No", meaning -Don't you dare say anything out loud about that or I will kill you. The whole time I am praying, Dear Lord don't let her say anything.

The smell passed and all was well, or so I thought....

After the service had ended, we were leaving the Sanctuary, and our Pastor, remember the sweet, humble, quiet one, was at the door shaking hands.

As we approached him, I shook his hand and told him I enjoyed the message. He bent down and took Kylee's hand and said, "How are you today, Miss Kylee?"

Without missing a single beat, and without any warning for me, Kylee looked at him square in the eye and said, "I was sitting behind you in church this morning and I smelled it. I know it was you who pooted."

FOR THE LOVE, I about died right there on the spot.

Thankfully, the really sweet Pastor laughed about it. I mean, really, what else could he do?

It's hilarious now.

I'm not sure where in the world she gets that candor? ;)

=],

Gracie

Tuesday, April 21, 2009

The Story Behind the Curls.....


Many of you have asked me the story of Hayden and how we came to have such a close relationship with him.

Hayden is our nephew, the son of my only brother, Brandon. Brandon is 10 years younger than me, so growing up, I was basically his 2nd Mother. When Paul and I got married, he practically stayed with us every chance he had.

Brandon and Raschel, the shy, quirky girl he was dating, had an "oops" and she got pregnant. She had basically a non-relationship with her Mother at the time, so I jumped in and offered to help any way I could. I went to her Doctor's visits with her, helped her with insurance, and so forth so on. She was just 18 years old and really had no clue.

I'll never forget seeing him on the ultrasound for the first time. I loved him before I knew him.

November 20, 2005, Hayden Alexander made his grand entrance into the world. Thankfully, I was in the delivery room, at her request. She was so scared and my brother was mostly useless. It was basically 2 kids, having a baby, at least mentally anyway.

Raschel developed postpartum depression after Hayden was born. I learned about it in nursing school and had read about it and but I had never witnessed anyone experience it first hand.

It was awful to watch. She loved Hayden no doubt, she attended to his physical needs meticulously, but the emotion was lacking. Now all of you know how strongly I feel about being a Mother and how serious I take that responsibility, so this was very difficult for me.

She couldn't help it, but I didn't understand it. I saw it was real, I saw it was terrible, and I saw it had devastating effects.

She sought and got treatment, and eventually got better but for the first 4 month's of Hayden's life, he lived with us. We kept him. We bonded with him. He was ours. We became so attached to him.

We did discuss adopting him then and again recently, but that is not going to happen. Oh, how we wish it would.

Once she was better and the time came for him to go home, we had grown so attached to that sweet baby boy.

Now, we get him on Friday afternoons and I take him home on my way to work Monday mornings. So, we basically have weekend custody/visitation. =)

We've had him every Christmas morning, every Mother's Day, every Father's Day, Thanksgiving, and Easter. I'm not complaining. I love him. ALOT. I am very much a traditionalist. She is not. These holidays are very important to me. To her, they are not.

They definitely have different parenting styles than we do and by no means am I saying I am Mother of the Year, but there is NO WAY, let me repeat, NO WAY, my kids would ever go off like that.

If I'm completely honest, I don't want her to be better or different. It would take him away from us and selfishly, I don't want that.

She loves him, again, I don't doubt that. I'm not telling this story to bash my, now, Sister-in-Law's parenting skills. We are different. That is the nicest way I know how to describe it. Different.

In the last few weeks, God has really been dealing with my heart where she is concerned. Have I been praying for her like I should? I admit it, the answer is No, I haven't. Somehow my heart God has softened my heart toward her. It's crazy to describe, and it's even crazier to understand, but my heart has become broken for her. I really feel for her.

We are living the American dream with our 2.5 kids. We are thankful he is in our lives. He has brought so much joy to us and more smiles than we can count.






Did I tell you our family is in love with this boy? The one who loves playing outside, who loves firetrucks, tractors, and bulldozers? The one who loves riding his Harley? The one who wants a ladder and a garbage truck for his 4th birthday? The one who thinks he is the Incredible Hulk? The one who loves Mickey Mouse? The one that wants to eat salt straight out of the shaker? The one who has beautiful green eyes like his Mother and gorgeous blond curls like his Daddy? The one who won't dare eat the ends of a french fry? The one that says he is going to play football at Auburn? The one who, when startled, will say, "You scared me outta crap"? The one that has everyone at the table hold hands so he can say the blessing? The one who is fascinated with the name Barack Obama? The one who says he and Santa Claus went to the White House and then went to the Circus with Barack Obama? The one who, at age 3, will say, "but we didn't vote for him"? The one who can't wait to go to Sunday School? The one who thought they took Jesus off the cross and put Him in the garage? The one who loved the beach and playing in the sand? The one who is scared of bugs, yet not at all afraid of heights? The one I don't think we'll ever get potty trained? The one, who before I ever knew him, had my heart? Yep, that's him and boy oh boy, we are hopelessly in love with him.

=],

Gracie

Orange for Stellan.....

**UPDATE: Baby Stellan is out of surgery. He has been extubated and will remain in CICU through the night. It was a very complicated surgery. They have a long, long road before them. Please, continue to pray. Nothing Dr. A found during surgery today was a surprise to God. He is The Great Physician, the One who formed Stellan's heart.

=],

Gracie


Sweet Baby Boy, Stellan, is undergoing heart surgery right this minute. Wear Orange for Stellan today to show you are praying for this gift from God. You can go to MckMama's site for updates.


=],

Gracie

Monday, April 20, 2009

Back to the Real World, 1st Stop the Doctor.....

We made it home from the beach last night. We came back with lots of memories and pictures to prove it. We had sooo much fun.

Haley, the eldest (R), and her BFF, Allison


Hayden


Kylee and Hayden


Kylee and Hayden


Kylee, the baby (L), and her buddy, Lyndsay



For the last 48 hours I have been running a fever. Two nights in a row I have worn a complete sweatsuit and socks to bed, only to be covered up with a comforter and 2 blankets. I ache all over from my head to my toes. It even hurts to touch my hair. My ears hurt and my throat feels as if there are 1878378 needles sticking it. The back of my throat is covered with pus pockets. Sorry, if that's TMI, but I am a nurse, remember.

I thought I would never finish that 5 hour drive home yesterday. My hubby was in his own vehicle, and the eldest daughter came back a day earlier with her BFF, Allison, otherwise, someone else could have driven and I would have taken medications to knock me out and slept the whole way home.

I went to my Doctor this morning. An injection of Rocephin (antibiotic) and 4 prescriptions later, I still feel like I am going to die. I know I will start feeling better soon. He told me not to even think about going to work until at least Thursday, so I will nearly have been off 2 weeks by then.

I know there is plenty going on Where Love and Care Make a Difference. My good friends there are really good at making me think all is well so I won't be at home worrying about what is going on there. My wonderful Assistant, Sherri, is without a doubt, holding down the fort and running the ship smoothly. Thanks, Sherri! I appreciate all you do, so much.

Probably after working so many hours the week of our State inspection without eating and then jumping right into being a Room Mom for all those girls,constantly running from one game to another with little sleep was more than my body could take. My immunity was low and this strep throat/ear/sinus infection won out.

Other than the Doctor, I have done nothing today but sleep. My Mother-in-Law took Kylee to school this morning for me. I love her. She is a wonderful lady and is sooo much help to me, even when I'm not sick.

This afternoon I have been able to catch up on some of your blogs. I have missed y'all BUNCHES.

Hope you all have a wonderful week!

=],

Gracie

Friday, April 17, 2009

My Very Own Surfer Boy.....

Hayden arrived yesterday afternoon. We couldn't wait to get him to the beach and on the sand. HE LOVED IT!! He looks so adorable in his swim trunks, just like a surfer dude =).
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He is too cute!

Have a great weekend all! We are now beachin' it as a family. I am LOVIN' this no make-up, flip flop stuff. =)

=],

Gracie

Wednesday, April 15, 2009

What Wonderful Children I Have.....

Hope you all are having a wonderful week. We are having a blast here in Gulf Shores, Alabama. This is the view off our balcony. Gorgeous, huh?
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We are still playing softball games. We will head back to the field at 3 for our 4pm game. That will finish us for today, then we will start back up at 8:30 in the morning.

I have decided I have wonderful children. I knew that already, but it only takes a few days with someone else's children to make you really appreciate yours. Don't get me wrong, I have a wonderful group of girls in my room. They have been absolutely no trouble whatsoever, but I was thinking last night how great my kids are. I am thankful for them and I am proud to be their Mom.

We have had the best time this week. We have laughed and laughed and then laughed some more =) Hayden is joining us tomorrow as the tournament comes to an end. I can't wait to see the beach through his eyes for the first time. I'm like a kid at Christmas waiting on them to get here. Here are me and the girls on the balcony before dinner last night. The eldest, Haley,17 (the softballer) on the left and the my baby, Kylee,12 on the right. Yes, she really is that much taller than me and Haley, and no, she is not wearing heels. Actually, we all 3 had on teva sandals with the same size heel. She definitely got all the height in the family. Me and Haley are jealous, too =)

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Have a great week my BF'S!

=],

Gracie


Monday, April 13, 2009

New Awards.....

I received 3 awards last week during my brief work related absence from my BF, Serenity. Thank you, Serenity for thinking of me. I truly love this Blog world and all of you, my BF's.


Not Me Monday, Spring Break Style.....


Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I AM NOT spending Spring Break in Gulf Shores, Alabama. =)

I AM NOT here at the beach for 7 glorious days.

I AM NOT a Room Mom for the girls on the High School softball team.

We ARE NOT playing in a tournament that ends Thursday.

Hayden IS NOT joining us Thursday for an extended stay through Sunday.

I AM NOT writing this post while watching the waves crash on the sandy white beach.

I AM NOT in awe of God's creation.

It DOES NOT leave me speechless to think that He knows exactly how many drops of water are in the ocean.

I AM NOT wondering what is happening Where Love and Care Make a Difference.

I DO NOT miss my dear friends.

We DID NOT have a wonderful day of Easter celebration yesterday.

I DID NOT tell Hayden the Resurrection story.

I DID NOT laugh hysterically when I asked him where they put Jesus after He died on the cross and he answered, "The Garage".

I DID NOT retell the Resurrection story.

I AM NOT glad last week is over and our State Survey is behind us.

I AM NOT extremely proud of my Love and Care team.

I WILL NOT post My Brain Is Dizzy, Part 4, soon, I promise.


Have a great week!


=],

Gracie

Thursday, April 9, 2009

Hello From Love and Care.....

Hey my BF's. Just wanted you all to know Gracie is fine. I have had an EXTREMELY busy week at work. It's been 16 and 17 hour work days for me this week Where Love and Care Make a Difference. I am actually posting this quick update from work. I will be back ASAP, to get caught up on all of your happenings.

=],

Gracie

Monday, April 6, 2009

My Brain is Dizzy, Part 3.....

Just when my feeble mind thought there was no way it could get worse, it did. MUCH WORSE.

February 6, 2008, Kylee had the worst seizure she's had yet. She was at school, pretty much typical seizure except this time she had leg involvement.

She was sitting in class in front of everybody. Her leg was jerking bad. It scared her teacher, but it scared those other students, too. Kylee, was unaware this was happening, at least at the time. She was MORTIFIED once she found out.

She slept a long time after this one. She had seized hard according to reports.

She was tired of being a trooper. I didn't blame her. I was tired of being a trooper, too.

She was embarassed. About a lot of things. The diagnosis. The seizures. The spacing out. The leg jerking. The being unable to stay awake afterward. The not being able to spend the night with her friends. The not being able to go to the bathroom or for that matter anywhere else by herself as well as all the other changes that had taken place.

After the 3rd seizure, she was calling me almost everyday from school. She was so afraid she was going to have another seizure. I was mad I couldn't guarantee her she wouldn't. If she felt a twinge of anything in her head, she would call me to come get her from school. Her voice sounded so frail and fragile over the phone. This is in stark contrast to her normal, in your face (like her Mom) personality.

When I say she was calling me everyday from school, I mean, literally, everyday. I thought I was going to lose my mind. I understood why she was calling. I knew she was afraid and embarassed. I knew that if she was going to have a seizure she wanted to have it in the privacy of our home and not in front of other students but I also knew she had to go to school. It was terrible. Not knowing if I should make her stay at school or not. I didn't make her. I just couldn't. I left work everyday when she called and went right over to that school and got my baby. Every single time.

For the first time in 18 years, I was torn between work and home. I had never felt like that before. It was a terrible feeling. I didn't like it. Remember, my place of employment was more than just a job to me. It's part of me. However, it would NEVER be more important than my daughter. EVER.

Even though they never once complained and remained totally supportive, I knew it wasn't fair to my job either. I was leaving everyday. My "Daddy"/Boss never said a word. He was wonderful. God couldn't have blessed me with a better place to work during this time than "Where Love and Care Make a Difference".

After MUCH praying, and many, many tears, I made one of the hardest decisions of my life. I resigned. From my job of 18 years, I resigned.

I just couldn't do it anymore. Physically and emotionally, I couldn't do it anymore. I was torn between the two. Kylee needed me. As mch as I knew that, I'll never forget having to force those words of resignation out of my mouth.

When I say my the owner of our company/my boss is like my Daddy, I really mean it. He introduces me as, "His daughter". He was stunned to say the least at my resignation. I cried, more like sobbed, while talking to him. He understood totally that my baby needed me. He said without hesitation I didn't need to worry about work and with her is where I needed to be.

He refused my resignation.

He told me to take a leave of abcense. Take as much time as I needed off. 1 month. 3 months. 6 months. It didn't matter. Whatever I needed, take it, and when I was ready to come back, my job would be waiting for me.

I didn't have the energy to fight with him. I said ok. I left that day with the intention of not going back. My baby needed me.

I was scheduled to go to Honduras March 24th-31st on a medical mission trip. There was NO WAY I could go out of the country with her so unstable. I was totally at peace with that decision.

I was at the school often helping with the PTO, doing whatever, so she would see me near, without me hovering. She and I knew why I was there, but the other students had no clue it was because she was scared and wanted her Mom there. We kept it that way.

With each day that passed without a seizure, her confidence grew. Her fear lessened. Her sassy, playful, outspoken personality started to return slowly, but very slowly.

I gradually reduced my days at the school. I was trying to wean her off of me. Finally, May came and then the last day of school. I have never been so glad to finish a school year. It had been so difficult in so many ways.

Part 4, Soon.

=],

Gracie

Saturday, April 4, 2009

My Brain Is Dizzy, Part 2.....

Complex Partial Seizures.

That was the diagnosis.

The bad news was Kylee had Complex Partial Seizures caused from Epilepsy. The good news was Kylee had Complex Partial Seizures caused from Epilepsy. Yes, you read it right. That was both the good news and the bad news. They were one in the same.

How is that? It was bad news that anything was wrong with my baby. It was bad news her life would never be the same again.

It was good news that her seizures were not caused from a brain tumor, or a scar or lesion on her brain. It was purely electrical in origin, with no explainable cause.

See, if he had been able to tell us why she was having seizures, it would have been bad, really, really bad.

The Neurologist told us the "dizziness" Kylee was feeling was an aura, you know the feeling some people get before they have a seizure.

He told us the EEG revealed her brain was constantly rapid firing electrical impulses telling her body to have a seizure, thus the feeling that her brain was dizzy.

He thought if we got her started on anti-seizure medication, hopefully we could get the medication to a therapeutic level before she had a full blown seizure.

I remember feeling like I had been kicked in the gut. Even though I knew that was a possibility, to actually hear it, was such a shock. I remember telling myself, "Keep it together, Do not cry". My heart was broken. I was broken. I was so many emotions at once.

I felt guilty as a Nurse for not seeing it sooner. I know she'd never had a "big", obvious seizure but looking back now, I know she was having some seizure activity. I felt guilty as a Mom for all the times she was in front of the television and I thought she was so engrossed in it she wasn't paying attention to me and I fussed at her. She'd tell me, "Mom, I didn't hear you" and I'd say, "How could you not hear me?" After the diagnosis, I knew she wasn't just not paying attention to me. She was having some activity then, as minimal as it may have been. I feel so guilty for that.

The Neurologist was kind and so informative. He didn't just explain it to me, He explained the diagnosis to Kylee. He asked her if she had any questions before he asked me if I had any. I appreciated that.

To be honest, she didn't have any idea what Epilepsy encompassed. I was glad. I remember getting in the car after the appointment and her looking at me and asking, "Ok, now what do I have?"

Everyone was waiting to hear what we found out. Those were the hardest phone calls I have ever made. Not necessarily because of the diagnosis, but because I was having to be strong in front of Kylee and for everybody else.

The 60 mile drive home from Birmingham was so hard. With each mile, it seemed we were further and further away from home. I wanted so bad to cry, I mean CRY. Sob. Scream. Cry. Like somehow, that would make it all better. I felt so alone.

I needed that release. I wanted to cry out to my Heavenly Father, literally. I wanted to cry to Him and tell Him how broken my heart was, and how scared I was and how mad I was that this was happening to my baby. I wanted to cry out for Him to fix it, to make it all better and make it go away.

5 weeks after the diagnosis and starting the anti-seizure medicine, Kylee had her first seizure. December 13, 2006 10:00am. I will never forget that day or that phone call from the School Nurse. The seizure itself didn't last long, only about a minute.

Kylee had reported to her Teacher, she was feeling "dizzy inside her head", so she immediately got the Nurse. Kylee had "the look". It is not a look I can really describe to you. I can tell you it is a look where you KNOW something is going on somewhere really important inside the body. She didn't look "right". She became pale and her skin was cold and clammy. Her eyes were wide open yet she was totally unaware of her surroundings. Once it had ended, she was exhausted and slept.

The body must recover its energy and sleep is how it does it. It works so hard during a seizure that it leaves it literally drained. Exhausted.

I raced from work, heart pounding, to get her. I needed to be there. I couldn't get there fast enough. The 7 minute drive seemed like an eternity.

Just when I had settled down a little from the initial diagnosis, here's seizure #1. Again, came the feelings of fear, and hopelessness and anger. They tumbled in. I prayed Christ would strengthen me. I prayed for my baby girl.

After the seizure, I called the Neurologist, who wanted to maintain the same dose of medicine. He thought maybe it hadn't had quite enough time to become therapeutic and wanted to give it a little more time. I was ok with this.

Kylee slept for about 2 hours following the seizure. Once she woke up, it was like nothing ever happened. She was fine, back to her normal self, with no residual. She had no recollection of the seizure.

Next day, same exact time, seizure #2. School Nurse calls. I remember thinking I can not believe this is happening, not two days in a row. Same exact scenario. She feels dizzy, Teacher gets Nurse, Kylee "looks' funny, seizure lasts 1 minute, she sleeps afterward.

Again, I race from work to get her. She sleeps 2 hours and wakes up back to normal with no memory of seizure.

I called Neurologist again. He has to do something today. He increases her medication without me having to request it. I was ok with this.

January 23, 2007, we had our 3rd big seizure. She was at school. Same time of morning as the other two, so this time the Neurologist increased the night time dose. She takes it every 12 hours.

She was a trooper. She really tried to be. Her body was doing weird things, she was having to take medication twice a day, staying at anybody else's house was out for the time being, riding her bike outside alone wouldn't be happening.

There were so many changes for her. She tried to settle into a normalcy. I tried to settle into a normalcy. I tried to remember not to be too overbearing, yet watchful. I wanted her to still be a kid, yet responsible. I wanted her to be careful and cautious yet live life fully.

We had so many people that were supportive and helpful. Her close friends were awesome. They were like little Mother's watching out for her in school. Their parents were great in talking to them and in explaining to them what was going on. We tried not to make a big deal out of it at least not in front of everybody. More than anything, we wanted her to feel like a normal child, not different.

I loved the people that would ask me what we found out and I would tell them she had a seizure disorder and they would say, "Oh, at least it ain't EPILEPSY", or "That ain't that EPILEPSY is it? As if Epilepsy = Leprosy.

What I wanted to say was, Yes, it is Epilepsy, thank you. Seizure Disorder is just a prettied up word for it because people like YOU think Epilepsy is a death sentence, the same as LEPROSY!!!!

My employer, was wonderful. I have worked there for 20 years. The owner of our company is like my Daddy. I was 17 when I went to work there, so needless to say it is like home.

Anytime Kylee called and needed me, I went. I would have went anyway even if they hadn't been great, but it's nice to know you don't have to worry about your job, or whether you'd still have one when you get back.

Things took a turn in February. It was by far the worst month.

=],

Gracie

Thursday, April 2, 2009

My Brain Is Dizzy, Part 1.....

In 2006, my youngest daughter Kylee, who was 10 at the time, started to complain of being dizzy "inside her head". The room wasn't spinning, she wasn't off balance, no headache, she just said her brain was dizzy.

Of course, that made us take a trip to our favorite Pediatrician. He did the expected things, a white blood count to check for infection or virus, glucose to check for hypo- or hyper- glycemia, and a thorough physical exam. All of these were within normal limits so he sent us on our way, with the typical instructions, "If it doesn't get better, bring her back".

Well, it didn't get better, and she continued with the same complaint, being dizzy inside her head. We went back to the Pediatrician, who again, performed the same tests as before with the same, normal, results.

He really wasn't concerned at all. Before him was a healthy 10 year old girl, with no obvious illness. Now, as most of you have figured out, I am not a very patient person, especially when it comes to my children and health issues.

My Pediatrician knows us well. He is the only Pediatrician we ever have used with either of our children. I respect him as a Physician and a Man. He respects me as a Mom and a Nurse. I made it very clear that I was less than satisfied with his lack of diagnosis and concern. He respected my opinion, but respectfully maintained his.

I love our Pediatrician. He is a wonderful, smart, caring Physician and quite honestly, had it been someone else's child or a patient of mine, I would have understood his choice/lack of treatment. I mean what was there to treat? All of her tests were normal. Here was a happy, thriving, 10 year old girl. Her only problem was that she had a very impatient, OCD, Mom that happened to be a Nurse.

That being said, at my insistence, our Doctor said he would refer us to somebody else, a specialist. So, he started with a referral to an ENT. This made sense, start with the least invasive, and work up.

We went to the ENT. It took him all of about 5 seconds to tell us her ears were not the problem. Cross that off. Next on the list, Cardiologist.

We went to see the Cardiologist, who ran a stress test which was normal and an Echo cardiogram, which showed a very, very slight leakage in one of her valves, so small in fact, he wasn't at all concerned about it and said we would never have known about it had we not had this test, as it would never have caused any symptoms or problems.

The Cardiologist was a kind Doctor, who listened to HER, and told us without a doubt, the problem was not her heart. He stated we needed to see a Neurologist, as it sounded like she was having either migraines or seizures.

He was also the first person to say we may never know the true cause of the problem, that we may be able to only rule out the major ones.

I got a referral for the Neurologist from our Pediatrician. He still maintained his opinion that we were not going to find anything but made the referral anyway, again, to appease me.

We saw a Pediatric Neurologist, who, we immediately felt comfortable with. He was very direct and straight forward. There was no sugar coating it or beating around the bush.

He was the first person to get it. I mean really get it. He understood what she was feeling and what she was describing. He knew what she meant when she said her brain was dizzy. He told us the same thing the Cardiologist told us, most likely migraines or seizures with the possibility of never finding out.

He scheduled a MRI and a EEG.

Ive told you before what a terrible patient Kylee is. I wasn't kidding. She always has been. It's bad when she is well, but it is a gazillion times worse when she is sick.

The feelings of dizziness left her scared and confused. Heck, I was scared and confused. She was in the 4th grade, and most of the episodes happened when she was at school. It scared her because she felt weird and didn't understand why, but also because she didn't want to be different. We all know how kids can be.

I cried out to God that He would touch my baby. I knew without a shadow of a doubt He had given her to us and I wanted Him to do something. To fix it, to make it better. TO MAKE IT GO AWAY!!! I wanted to be so strong for her and everybody else, but I was scared to death.

I don't share my feelings often or very well. That is why this blog has been so therapeutic for me. I usually keep everything inside, again, to be the strong one. I don't want anybody worrying because they see me worry. Plus, truth be told, I want to be a strong person, and not a weak person. Let me stop and clarify this, I don't think people that share their feelings are weak, but, In my crazy mind, I think other people will think I'm weak.

So, I carried on, with a big smile on my face, telling my Husband, my Mom, and my Friends that everything was going to be ok, and that I was ok. I was very good at fooling everybody into thinking I was ok. Truth was, I was literally trembling on the inside with fear. Fear of the unknown, fear of the what if's, fear of the known, fear of the tests, and the poking and the prodding, fear of being TOTALLY helpless and out of control and unable to "fix it" for your child like a Mom is suppose to do.

Even though I love and respect our Pediatrician, I was a Mother literally fighting for her child. I was bound and determined we were going to get to the bottom of this. For her to complain of her head being dizzy, and KNOW complaining was going to land her at the Doctor, I knew something was going on.

EEG and MRI.......

These were scheduled by the Pediatric Neurologist to be done
November 6, 2006. She was terrified at the sound of these tests. I was terrified at their results.

We had people everywhere praying, for not only the results of these tests, but for Kylee during these tests. I knew she would be inside the MRI machine and would have to remain completely still. I knew that would be overwhelming to her. Thankfully, they let me go in the MRI suite with her.

I sat at the end of the MRI machine and told her I wouldn't leave and I wouldn't take my hand off her right leg. Isn't that just like God, He may not keep us from going through certain things, no more than I could keep Kylee from having to go through that test, but He stays with us the whole time and never takes His hand off us. I like that.

I guess I could have kept her from the test but it wouldn't have been for her own good. We needed that test to know what was wrong with her and what to do next.

God allows us to experience things for our own good. He knows what is down the road and what we will need to equip ourselves. That's good, isn't it.

Anyway, much to my dismay, with the help of the One True God, Kylee was a dream patient. Yes, you read it right, Kylee was a dream patient. In fact, as soon as the MRI was completed, the Technician said, "You did great, I wish my adults would act as good." If I had not been there, I would not have believed it. She was the perfect patient.

I told her how proud I was of her and asked her how she was able to lay there so still. She quickly replied, "I knew I had to do it but I knew you were right there with me, Mom. I could feel your hand on my leg the whole time".

Even as I remember this now, it brings tears to my eyes. There have been so many times I didn't think I would make it through, I didn't think I could go one more step, but I knew I had to and I could feel His Hand on me the entire time.

They wouldn't let me go back for the EEG. She said it was a piece of cake. She was less than thrilled at all the conduction gel that they put in her hair, and actually told them they needed to keep shampoo in their bathroom so that people could wash their hair when they get finished. I'm not really sure where she gets this bluntness from, snicker =)

Once all the tests were finished, we met with the Doctor, who spoke three words that would change our lives forever.....Complex Partial Seizures.


Part 2, Soon.


=],

Gracie