Happy and Safe Trick or Treating <3

Happy to be Home

Thank you everyone for your thoughts and prayers over the last few weeks and especially the last couple days. We are home and happy to be here! The tests went well... difficult at times but well. The neurologist came in this morning and let us know that they did see some abnormalities on the EEG and it did confirm what we already knew, that Sophia has epilepsy. The good news is that the doctor does not want to start her back on medication. They are going to do another test in 2 months to see if the seizure activity in the brain is any worse (there is still a small amount of medication in her system that could be helping it not to be so bad). Then another EEG four months after that. If she does good during this time and doesn't have any serious seizure episodes she should be able to remain medication free. We are still supposed to use Diastat for seizures over four minutes but anything other we are to document and let the doctor know. What a relief to have this over with.. it was worth it! Thank you for your kindness, thoughts, and prayers. We are so blessed to have such wondeful family and friends.
Love,
Tony, Holly, Sophia, and Troy

thinking in the quiet...

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wondeful, I know that full well." Psalm 139:13-14

Funny that this is one of Sophia's memory verses in Sunday school, I didn't realize all week but I have been reminding myself whatever the outcome it will be perfect and I have been repeating this scripture in my head all week.

Sophia says "I praise You, because You made me wonderful!"

Peace and Quiet

This is the quietest this hospital room has been since Monday when we arrived. I am glad I got woke up this morning by all the noise outside, it makes me appreciate the quiet much more. ;) Sophia slept good from about 8 until 10, when a nurse came in to check her vitals, I knew that this would wake her. Sure enough she woke scared and screaming. I can't wait to run my fingers in her hair and kiss her forehead. We aren't supposed to touch the "gauze hat" because the electrodes under it are all attached and I guess they could come loose. I didn't realize how often I comfort her by rubbing her head or playing with her hair until now. I did get her back to sleep by 1030 but she was so unhappy. It was really disturbing to see her hitting her head like she was. I know she was just fed up with all of this and I don't blame her, she is acting out like any three year old would. She will be glad to go home today. I hope we don't bring any germies home with us. The hallway here smells like Lysol. I told Sophia that I wouldn't wash my hair until she was able to wash hers... and I know my head is itchy!! I bet hers feels even worse with that gauze wrapped over her. They have kept this room very cold because they said the wrap gets hot and sweaty easily. Yes, I am fasting from washing my hair, gross huh!? I believe Auntie Rie isn't washing her hair either :) First thing I am going to do when we get home is jump in the shower with Sophia and wash our hair!

Back to the peacefulness of this morning though, it is like a busy airport here. Tony said it was like an ant farm with hundreds of busy ants. It's a shame because rarely do you get a smile or anyone acknowledges you- makes me all more aware to be kind to others. You never know what is going on in people's lives and you should never assume either. I remember when Sophia was little and she was first going through her MRIs, EEGs, and other tests for the first time. She was probably about 15 months old and I was sitting with her outside a restaurant. She was crying and feeling pretty bad, after sleep deprivation, fasting, and to top it off she had had the stomach flu... I was holding her as she cried and I got tears in my eyes and this girl walked up and said "oh come on it can't be that bad" -well, it can.

A simple smile and a wave means the world to a child. While we have been here it's the handful of people who made this stay a good one while the majority were cold and just plain rude. I wish that it was opposite and there was just a handful who were rude... but those few who were nice, there kindness shines and those are the thoughts we will take home with us. My sweet angel girl thanked God last night for "Miss Cole (Nicole), the lady who brung me toys, the one who brung me a sticker, the nurse with the fish shirt, and Rosa the food princess" -It really doesn't take much to make a child feel good. To the loud doctor whose booming voice echos down the hall at 2am, sick children are trying to sleep is it really necessary?

And here was the excitment for the day.. "'Giarafy' broke his head off" and the nurse with the fish on her shirt gave him a bandage until we can go home and sow him back together again. Yes, his head literally broke off. :)



Well, we are going home some time today. I think around noon. I should have the results from the tests when we leave and that will make all of this worth it. Thank God for the technology we have. Praying for great test results!

Long Day...

Poor baby girl. She is so exhausted and sick of all of this. I don't blame her. We have had the worst 3 hours ever. She was just feed up. Today was the hardest of the days, she was so tired. The doctor came in and with the good new about the test she also informed me to not let her sleep until tonight. She was tired from about 10am on. Tony and Troy came to visit today. Troy and Sophia were so happy to see one another. They are two peas in a pod. I was glad Tony brought him but it was rough having Troy in the hospital room with Sophia who was grumpy herself. I was so happy to see my boy though, and my wonderful husband too. :) The last three hours from 5 to 8 were horrible. She screamed, cried, hit herself in the head, she was soo miserable. The gauze I am sure gets hot and sticky under there by the third day. She cried for her daddy and it broke my heart. The nurse came in to check on her and she screamed "get away from me-". The sleep deprivation is a hard thing to see. She said her tummy hurts, her head hurt, she just ached all over I am sure from the lack of sleep. I started the bedtime routine early because I knew it would take her a long time to calm down, I am glad I did it that way because it was so rough on her. She is sleeping sound for now and I am going to get some rest in case last night repeats itself. I can handle anything for the test 12 hours. :)

Praise God!

The nuerologist just came in and said that the EEG up to this point has been totally normal!! Thank God! I haven't seen any episodes yet so they are going to try and induce one today, they said not to let her sleep until bedtime.. do they know what kind of a night we had last night, ugh! We will do it.. with hopes all goes well and we can leave her on no medication! :)

Fun evening, bad night...

It was an exhuasting night. She was right, she wasn't going to sleep in this hopsital. :) My dear friend Megan came to the hospital last night with her two children, Gracie and Colt (Sophia calls him Baby Hulk). Let me add the hospital is a solid two hours from her house and her children are under two, not an easy task- it meant the world to Sophia! She had been quite gloomy the last portion of the day. A phone call from her friend Anna from church cheered her up a bit but that smile quickly faded as the phone hung up... I was running out of ideas and feeling a bit gloomy myself but I knew Megan was coming. Megan walked in the door with Gracie, Colt, and Wendys! Yummy! It was nice to vist and let the girls play. Sophia told Megan "look at me", she knows she looks funny with that "gauze hat" on her head. She was so happy to have her friends here. It really helped the time go by.




Then at 8, shift change, we had a nice nurse named Jennifer, she was sweet when we saw her, we didn't see much of her, which is good I guess. After that we got ready for bed and the fun began. She really was NOT going to sleep here. Finally she doozed off around 10 and stayed asleep until about 1am, then woke up crying, fussying, saying she wanted to go to sleep in her bed, in her house, she said Troy missed her, Daddy would cry since she wasn't home, her head hurt.. on and on and on and on... I doozed off at 3am, she told me "you can go to sleep, I am NOT sleeping here"... I woke up at 6 and she was awake and about 10 minutes later she told me "I'm going to bed now"... She's been sleeping for about an hour. :) Poor baby.

One day down and two to go.... Daddy and Troy are coming today so that should make her happy. I sent him a text this morning and told him to bring my Nike shoes, my socks, and my toothbrush :)

Finally some rest...

I have to say that all there is to do here is be online, so if you find that I am blogging lots in the next two days that is why! We finally got some Mac N Cheese and the nurse even brought her some chocolate ice cream. She is doing her best to be happy. I am trying to catch the joyful moments on film. While they were wrapping her head you could see that she would try to fight back tears but she never did cry. I hate that she has to be brave, but proud that she is. I suggested a nap and she told me "I am not sleeping here" I told her we would be sleeping here for the next couple days, she didn't want anything to do with that saying "you can, but I am not staying here." That hard-headed child, I don't know where she gets it from!? Must be her dad. She ate, gave her toys a bath (Winnie the Pooh toys from her Aunt Jo Jo), watched a movie, was ooohhh so fussy, and then finally feel asleep. The monitor for the test, who is upstairs watching her on a video, called down and told me that she shakes her head to much and she was pulling the wires too much... ok, well, I bet if you had all that crap on your head you'd pull it too! :)
Have I mentioned that we have great family and friends- Mimi came over this morning before we left for the hospital to visit with her. Auntie Rie sent her some special princess socks to wear that say "little stinker" on the bottom and some awesome stickers that I am doing my best to save for tomorrow. Emily made her the sweetest gift bag of little wrapped gifts which we are opening one when she gets fussy and needs a distraction. Megan is bringing Gracie to visit and to eat tonight so that is something she can look forward too. Tony is calling often and doing an excellent job with Troy. I miss him but I know he is happy with his daddy- they are going to try and come tomorrow. It is so great to have such caring people around us. Phone calls, emails, prayers- it all means so much. Thanks.

We are here...

We are here, hungry and waiting for them to put her food order in... we can't order until they do that. My poor kid is hungry and uncomfortable... this hospital sucks! :) I hope we get some food quick! Silly me, I didn't pack food for her, not like there is a cafeteria down stairs! She doesn't want me to leave and go get her food and I sure don't feel comfortable doing that anyway... she doesn't even have a hospital ID braclet on yet!!?? SECURITY!! :) Have I mentioned that they started the test about 3 hours ago, they did the strobe light test and they did the air test, where she blows air over and over... she is tired and hungry, I hope they get us in the system soon. This sucks! Can you tell I am spoiled as far as hospitals go- our local hospital is one of the best! We aren't used to this one... Have I mentioned that the wall paper is literally peeling off the walls in this room! OK, I promise my next post will be much more positive and uplifting...

My wild ones...

I love them! My children bring me such joy! I hope that as a child of God I can bring my Holy Father such joy. <3

Sophia told me today, "God's like a daddy, but He's not, but He is!"

I am definatly feeling some axiety about this hospital visit. I hadn't told Sophia, I didn't want her worrying about it. She does ok at the doctor but recently has developed some hesitation about it, rightfully so, but it is heartbreaking to hear her cry in the car on the way to an appointment. So, I explained to her that we were going to go on a "girls only" trip to the hospital just me and her. I told her that is was special and we would spend three days doing girly things like painting our nails and dressing up and eatting good hospital food :) ok I exhaugerated a bit but you would too. She seemed ok with it. She asked me why we were going to the hospital. I told her for some tests. I told her they were going to put the "princess crown" on her head again, she wasn't so happy about that. She asked if she had to sleep there, I told her yes, but that I would stay there too. She said that Troy would miss her. I told her Tony was going to bring him to see us. It was an exhuasting conversation that went on and on. To conclude, I think she was pretty comfortable with our plan for the hosptial stay. I just pray that the people working will do their best to make her feel comfortable. It's hard when you are putting your child in an environment and you don't know how the people caring for them will act. When I called the hosptial with some questions, the lady seemed annoyed and very busy, which I understand but how can I tell my daughter what to expect when I don't even know. I know God will be watching over her. When she has seizures I pray the same prayer everytime and I pray it again tonight and I am sure it will repeat itself many times this week.
"God send your angels to wrap their wings around her and bring her peace."
I know He will...

A long week.

Figured I'd add some pictures from Troy's birthday.. the cake...

I am pretty proud that with everything going on in our lives I am able to keep my children happy and healthy and Innocent in all of this. We have really had a lot on our plates. Tony's job is very dependent on the stock market and the economy. We are moving from our house into a smaller home so that we can better manage things and if Tony wants to do a job change it will make things much easier. Last week there was a scare with our health insurance and we got news that as of Oct. 31st we were losing coverage. It was so upsetting, especially having Sophia going into the hospital and off seizure medication. It was a scramble to figure out what we were going to do. I am sure some of you realize how hard it is to find coverage when you have 'preexisting conditions' like epilepsy. I went to a job interview, made plans to put the kids in daycare, it was so hard to imagine and happening all to fast. I figured if I got a job I could get health coverage for us. The cost of daycare is unheard of for two small children! How a single mother does it I don't know!? I didn't get the job, I need to take a few classes in medical terminology and then I can apply again, which I might do after we move. But- that didn't help our health insurance issues. I prayed for an answer... Sophia needed to be seen by a neurologist when we get out of the hospital to find out the results and see if she needs to go back on medication and what kind, etc. but with no coverage that would be bad... God provides! Tony called me that afternoon, he got coverage! The same coverage we had, no changing doctors, even better is will cost him $200 less a month and if he loses his job he can keep the coverage! We were over joyed to say the least! Then our house, we are house hunting.. and I found one! It is a lot smaller than where we live now but that's ok it's much more reasonable and affordable, especially if Tony does a job change. Things are so crazy right now. We are going to look at the house today at 2, Tony hasn't seen it yet, but I am sure he will like it. :) Then it's just financing.. which I hear can be tricky with the credit freeze and the morgage crisis, what is meant to be will be. It will be ok. I keep telling myself that. There is so much to be thankful for right now in the midst of all the changes. Sophia is off all medication and doing great! She is happy, alert, just perfect! I hope the EEG goes well next week and she doesn't have to go back on medication. OH- also, she ran a fever this week.. and did NOT have a seizure!!!!!!!!! Can you believe it!! God took care of that baby, I don't remember the last time she ran a fever and didn't have a seizure! It was a miracle! She did have a night terror, I think from the high fever, but I can handle that compared to a seizure anytime. Well, I am off to get ready to see the house and then to the fall festival to take the kids trick or treating on Main Street. Tomorrow we are going to our church's fall festival, then it's packing for the hospital. We have to be there at 1030. I am hoping they have WIFI and you know I'll be in touch and defiantly letting you guys know how things are going over there! :)

My boy's day.

Today was Troy's day. It was a wonderful day. You know how I feel about birthdays... it was a beautiful day to celebrate our son's life and the joy he has brought our lives. We had the party at a local park and it was perfect. Family and some friends were there to play, eat, and be together. It was a great day. Tony and I have a lot going on right now, a lot going on at his job, the economy, a lot going on with Sophia, lots of praying- but my prayers last night were answered and I was able to focus on the joy of my son's first birthday and not worry about anything else. I commited one day to not stress about the things going on in our life right now... it was wonderful. It really was perfect.

My baby's gonna be 1...

My sweet baby boy is going to be one tomorrow!! I can hardly believe it. Time sure does fly by. He is being sweet as ever today. Smiling, waving, saying HI MOMMA.... with his little arm way in the air. So sweet! I love him so much. He is sportin' a battle wound for his first birthday. We wasn't being so sweet yesterday... he threw our little Walmart shopping cart at Sophia yesterday then tried to jump over it onto her and he fell and the cart cut above and below his eye. He is lucky that it didn't get in his eye! That crazy boy!! :)
We are having a party at the park for him. We have invited family and friends to come celebrate with us. I'll have lots of pictures to share! We are having a crayon themed party. I made centerpieces with coloring books, crayons, tissue paper and ribbon... the kids can take them home after the party as party favors. I was pretty proud of myself for that idea. My friend Kelly has made him a cake that looks like a box of crayons- she is soo talented! Email me if you want her contact info for a cake she is very reasonably priced and does a great job!
Sophia is doing great with her meds, we are down to 1ml of trileptal, no diastat, and no clonezepam. She is so happy and alert. Seems like she is able to process and handle things without being so highly emotional. The test is the week of Halloween. By next week she should be totally weaned off of the Trileptal.
Thank you for your emails, thoughts, and prayers. Hope everyone is having a wonderful week and wishing you all a great weekend.

If you were on a deserted island and could only take one thing what would it be?

First response to this question was....
TONY! He can build a fire with sticks. ;)
He really can.. he is quite the survivalist. Do you guys ever watch Man vs. Wild? I swear that man, Bear, makes the Crocodile Hunter roll over in his grave, did you know he killed and ate an alligator on the last episode!? Well, I think that Bear guy is Tony's favorite person on TV. So, my first answer to what I would take with me on a deserted island? Tony! What would you take?? First thing to come in your mind??

Now, Sophia is doing alright with the medication changes. I think she may have had some seizure activity today though, it's so hard to tell. We have been gradually weaning off and up until this point I haven't noticed anything abnormal. Tony and I are very hypersensitive to her though. I picked her up from school and she was crying, which she never is, she said her tummy was hurting but she was pointing to her heart, ate her lunch, looked kind of gray, said she wanted her doctor, really cranky... then she got a bath (disinfected) before nap time... seemed fine, but I noticed her eye was droopy which happens when she has seizures, don't really know what all that was about!? She is sleeping now though and went to bed happy.
On the positive side she seems to be much more alert and a bit hyper at times, sometimes has a hard time focusing, tells me she feels hyper... but soo happy! That makes me feel good.
It's so bittersweet. I love seeing her weaning of the medication and the possibilities of not being on medication, then this... the episodes, the unknown. I just want to get through the test and go from there. So hard not to get excited about her not being on medication, but I have to remind myself that she may need it, this episode today reminded me of that.
The teacher at school said she was building and tower with blocks and someone knocked it over, they said she got really upset about it... might have been something that triggered this episode.
Goodness, I need a nap! ;)
Hope everyone is having a lovely yet prayerful day...

Send up your prayers today for families who have an angel in heaven.

Life Lessons...

Everyday something new... We have been having the most amazing sermon series "till death do us part", obviously a marriage series. This has been an amazing three weeks of learning. Sunday they showed this video...
http://www.youtube.com/watch?v=ED2ZnQ5rFIY
Very powerful! I hope you will take time to watch it.
More on this later but know that "powerful God things" are happening here. ;)

One more and Updates!

This is an old one too but too cute not to share...


BTW, things are going great weaning Sophia off of her seizure medication. She seems so much more active, energetic, and sweet! ;) Thanks for your prayers! Keep praying.
Also, Maciee is going to be back at school tomorrow! Chantal is at home waiting for the birth of her daughter, luckily she doesn't have to stay at the hospital, but her hubby says she is bored out of her mind, miserable, laying in the bed at home (obviously on bedrest) anywho, thank you for your prayers!

Trying Somethin...

I made a youtube account...
Check out Sophia doing the "diaper wiggle" when she was a little younger and she had a full diaper she used to do a diaper shake dance. ;)

Sophia weaning off seizure meds

I updated earlier about the neurologist calling with a date for Sophia's EEG study. I spoke with them again later in the day and they informed me that I needed to start weaning her off of all seizure meds as of tomorrow. At first I was over joyed at the thought, then quickly came the overwhelming fear of what the 5 days before the EEG that she will have no meds in her system will be like. It was been about a year and a half since I have seen her on no seizure meds. During that time she had febrile seizures and absence seizures and focal seizures... needless to say I am slightly nervous. Also, so excited at the possiblity of seeing this beautiful girl off of all medicaiton. If during this time and the 72 hour study she has no seizure activity there is a possiblity that they will keep her off of the Trileptal and only use the Diastat and Clonezapam as needed. Lots of things to think about, I am going to try and not think about it... :)
I took some darling pictures of the kids today but I left my camera in Troy's room and I am not going to chance trying to get it and accidently wake him. So look for a picture blog from me tomorrow documenting our fun night while the kids were helping me make dinner, breakfast for dinner, pancakes.

We got our date...

Sophia will be going into the hospital on the 27th for a three day EEG study. I am nervous about it but will be right by her side. This will be the longest I will have been away from Troy and it makes me sad to think about. The hospital is in another city and I really don't want Troy in the dirty hospital anyway. So he will stay home with Daddy and Mimi, as they will take turns caring for him. I'll write more on this later but wanted to update those of you who were waiting to know if and when we were going to do this.

Call me a "Hater" and then something really cool...

So, call me a "hater" but I have to say this. I have watched Hulk Hogan since I was a young child. I watched Hogan Knows Best on MTV, I am a reality TV junkie. As I write this I am watching RW/RR Challenge: The Island. I have always been pretty indifferent to the show. I think they are funny, stupid, spoiled, and at times real. I pity both families who were involved in the car accident with Nick Hogan. They are people, they make mistakes and I am not going to pass judgement in such a horrible situation.
Like I said, pretty indifferent, and I have never written anything like this... but... it must be said! Sunday night was the spin off from Hogan Knows Best with Brooke Hogan, called Brooke Knows Best. I have been watching the show for a while now. It is my "mindless entertainment", I need to unwind and watch something that means nothing once I get the kids to sleep. All day, Tony and I text message and follow the stock market, the election, the important things... but at night, I just can't sleep after watching a story about a missing child or a father who murdered his family and then killed himself because of economic hardships... thus, I watch reality television. Let me say, I did NOT sleep well after watching Brooke Knows Best on Sunday night.
Until this time I was indifferent, I just didn't care... it was entertaining and didn't give me that hollow feeling in the pit of my stomach. However, this week's episode, incase you didn't see it (I hope you didn't share the pain with me) but it was Brooke Hogan considering going to college. During the episode she was taken to meet with a guidance counsellor, she sat through a college literature class, she saw the dorm rooms, and off course she went to a bonfire and got to meet some other college students. Now, sounds like a good episode right? WRONG! She was so incredibly spoiled acting, which is not a surprise, that's the common thread in every episode.. however, she acted more spoiled and more snotty than I have ever seen. She mocked the guidance counsellor, was disrespectful to the employees and the students. You could tell she thought she was being cute... since when has acting less intelligent and just plain rude become a trait that young women should thrive for and think is attractive?
You know being a young woman in her position, she has media attention, she has seen her fair share of hurt and upset in the situation with her brother and her parents divorce... she could be a strong, independent, professional, fun, happy, sexy, energetic, young woman and really be an example for other young women... or even be a selfish, spoiled stink that lives in a Miami penthouse and doesn't do anything for the world but have a pointless show and makes bad pop music. Instead she has gone to a college and degraded everyone practically everyone she came in contact with. Picked fun at the living conditions in the dorm rooms, acting above everyone.
Does she not realize that there are young people who pray that they will get accepted to college, pray that their scholarships or grants will go through, people who work full time to pay for one class a semester while they take care of a family, people who never have the opportunity to go to college... then you have Brooke Hogan who instead of using the opportunity to give credit, admiration, and clarity to the role of students in a college setting, she made it seem like that life was for middle class citizens with nothing better to do. Mocking the living conditions like she was too good for that kind of life. I am sure college literature isn't the most thrilling class, but don't be so disrespectful as to fall asleep, phone ringing... disrupting the class. It wasn't funny, it wasn't entertaining, that show was annoying!
Don't even get me started on Paris Hilton's My New BFF show...
But, seriously... what horrible example for our young women in today's society. I'll tell you I don't want my daughter thinking an ignorant and condescending attitude is at all attractive.
OK, I promise never to do a post like this again.. but I had to get it out. :)
Now, let me add something really special... October is Breast Cancer Awareness Month, now regardless of your (or my) political stance this was a really cool thing that happened at the White House last night. :)

"Jello in hees mouff"

Troy got his first bloody lip last night. In my opinion, at 11 months old as active as this child is for this to be the first bloody lip, we have done pretty good protecting his little face. Last night the kids were playing in Troy's room while I was running back and forth trying to get them dressed for bed. It was kind of late because we had ballet last night and the later it gets the more wobbly Troy becomes. He was walking around his room like a little drunk man and smacked right into the side of his crib. I was in the other room making a bottle and Sophia comes in and says "Troy has jello in hees mouff."
I ran in the room to find him screaming only to find blood in his mouth and all over his jammies. I grabbed a burp cloth and the mommy in me took over. I explained to Sophia that the red stuff wasn't jello, it was blood. She was explaining what happened to Troy to her grandma on the phone and it went something like this...
"And Troy bumped hees mouff, then he had bloud in hees mouff, then he was screamin', and his teeff were bleedin', then momma put a rag in hees mouff, and he was cryin', then it yooked yike jello in he's mouff"
Troy is alright and we are defiantly going to work on the L sounds, the W, the TH, and those stinky pronouns... :)

Updates on Prayer Requests...

Maciee is doing good. Hopefully they will be going home from children's hospital today or tomorrow. They did find that she had a virus that attacked her brain causing nuerological symptoms. From what I hear she is on antibiotics, doing much better and the swelling in her brain is going down., God Bless them! I am so relieved that she will be ok and they are coming home.
As for my friend, Chantal, she is still in the hosptial waiting to have that baby girl. They are going to keep her until the birth of the baby. She isn't on steroids anymore... basically from what I hear they are just waiting for the baby to be born.
Thank you for your prayers.
God Bless.

Pray with Us

Sophia's dear friend, Maciee is sick. They don't know exactly what is wrong with her. From what I have been told she woke up Saturday morning dizzy and couldn't stand. She has been at children's hospital since Saturday. She is in good spirits but not understanding why she can't go home. I am sure her parents are exhausted and terrified. We are praying for a simple answer but the unknown is so difficult as most of you know. Awaiting results from a spinal tap and an MRI. Please keep sweet Maciee in your prayers. Sophia adores her and was very upset that Maciee wasn't in school today. I told her she'd be back next week :)

Also, friends of ours our sitting tight in the hospital awaiting the birth of their sweet baby girl. She is 7 weeks early and mom is on steroids to help the babies lungs. They have three other children waiting at home for their new sister's arrival. Keep them in your prayers too, please.

As always pray for our government. Our country.

God Bless.

Hope everyone has a blessed week.

Happy Birthday Dad!

Wow! Was I emotional at that last post or what???

So here's the deal, the new doctor felt that it was necessary to take Sophia into children's hospital for a 72 hour EEG study... during this time they would try and provoke her to have a seizure, this way the could see exactly what her brain does during the seizure, the would be able to identify if it is generalized or all over and what part of the brain is affected. She said if Sophia had a seizure during the 72 hours we would then be discharged and wouldn't have to stay for the remainder of the time. They just want to see one episode on the EEG. When I say provoke a seizure we would interrupt her sleep patterns and other things- I don't even want to think about it. Obviously it wouldn't be painful just stressful... I hate to think we would deliberately try and stress her to the point of a seizure. I see the benefits of the test but it's a lot to think about. After the past two years and trying to prevent seizure after seizure to now say we are going to try and make one happen... I just can't wrap my mind around it. I don't know what to do. I am going to be making some phone calls this week while the doctor's office deals with the insurance and hospital stuff... I figured I'd go ahead and let them make arrangements, it will take long enough to do that. So, that's what the doctor wants to do. She was hopeful that if the EEG did come back totally normal that it might be possible to take Sophia off of an every 12 hour type of seizure medication and instead use the Diastat only when she is having a seizure and Clonazepam when she is running a fever to prevent the febrile seizures. That was an exciting possibility. I love the thought of not having her on the Trileptal anymore. I just hate the thought of that test. If any of you have done that email me or comment and let me know how it goes...

On a brighter note: Today was my Dad's Birthday!!! We went to my parent's house and had a BBQ. The kids made a scarecrow for the front of the farm and we spent the day together as family. It was fun! It was relaxing! It was wonderful!

Sophia and her cousin, Gracie... their scarecrow!


Me and My Sweet Boy

Then, the daddies (Tony and my brother, Virgil) took over the scarecrow...

Their finished product... minus a head!

My Mom and Dad with the scarecrow... minus the pumpkin head...

Just Be

Sitting in the sunlight outside. Troy is napping and Sophia is inside watching Dragon Tales in my bed. I couldn't get her to take a nap today so that quiet time will have to do for today. She went to her new neurologist today, she's pretty wound up about that. That's probably why she didn't nap today. We drove down to Orlando just Sophia and I. She cried on the way there begging me to turn around and go home. She asked me if she could listen to her "musicick", she loves the Casting Crowns CD that I keep in my car. Funny that she asks to listen to it every time we are going to a neurology appointment. It must bring her comfort. My grandmother came over and kept Troy. It's too much having both of them in the room and trying to speak with the doctor. It is hard enough with Sophia, who gets nervous and talks a million miles a minute and interrupts every other word, much less adding Troy in the mix. Thank God for family at times like this, and the friends who so kindly offered to keep him, thanks Katie and Doreen. It is never fun to drive this drive, but I was comforted to know he was happy and safe spending some quality time with his GREAT grandma, the kids call her "GiGi". She is a God-send to our family, I don't know what I'd do without her, always there to tie up the loose ends when we need her.

I have a throbbing headache and am torn as to what path to take with treatment for my sweet girl . The new doctor was great. I agreed with most of what she said and loved that she was hopeful at the possibility of having Sophia off an everyday type of seizure medication. There were some things I was hesitant about, tests and such that she felt were necessary, but I know this is part of our course with our sweet girl. Tony says we owe it to Sophia to see what is really going on in that head of hers so I think we are going to continue with this doctor's plans and pray faithfully that questions will be answered.

It is so difficult to know what is the right thing to do. I know it's not, but there are days I feel it is all on my shoulders, why can't the plan for treatment be in a book laid out for us, why does it have to be so vague? The brain is a complex thing I guess. God made it wonderfully complex.

I imagine, not having her on seizure medication though? I wonder what ways things would be different? Would she have so many mood swings? Would she complain of her tummy hurting as much? Would she have more absence seizures? Would she be happier? Could she be any happier? The positive and the negative waying heavy on my heart right now. The questions are flooding my mind.

It feels good to be. Just be. Outside feeling the sun on my denim jeans, the slight breeze that comes every few seconds only lasting moments, the neighbors dog barking in the background, someone mowing their grass, an airplane over head, breathing the warm air and feeling it fill my lungs. Take a moment and just be.

I am going to meditate and pray for God's will....

Thanks for being here, reading, and praying... I'll update more later.