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.