Thursday, December 31, 2009

Reflection 2009

2009 is gone and we're in the second day of 2010. We rang in the New Year in perfect fashion.(other than Hannah and I having a bad cold) My guys, the girlfriend, Dave, and myself had snacks, watched movies, and played Wii. It was great just hanging out and enjoying each other. 2009 was a year I won't soon forget. I can't really summarize the year into a couple of words. I think this was a year of learning to trust. It was also a year of realizing that I am not as independent as I think I am, and that it is o.k. I need people. Most of all I need God and can do nothing without Him.

A friend posted on her face book this scripture...The Lord says, "Do not remember the former things, or consider the things of old. I am about to do a new thing; now it springs forth, do you not perceive it?" ~Isaiah 43:18-19 (NRSV)

I'm so ready for a new thing. I'm ready God! Our family is ready!

Oh, how I hope that part of that new thing is a way to manage Hannah's seizures or stop them altogether! I also hope that we find ways to boost her development and enhance her quality of life!

I hope David's career goals are met and that as a family we find the perfect home and community to be part of as we relocate. I hope Kyle decides on a educational path that he feels confident in and will enhance his wonderful talents.

I hope we reconnect with old friends and make new friends. And I hope that all our friends and family enjoy health, faith, wealth, and abundant joy.

Even if none of those things are in His new thing...my hope is renewed and in HIM I trust!

God Bless you in 2010! Let's begin 2010 with a GRIN! :)

Wednesday, December 30, 2009

Woo Hoo Daddy gets a holiday vacation....

David's CEO announced that he was having them take off today at 4 and they are not to return until Jan. 6th at 1 p.m. He's giving them a holiday vacation. Hannah will be in heaven having daddy home.

Kyle turns 18 today. It's hard to believe. It seems like just yesterday he was toddling around beating his drums and dancing to his daddy's music. It's a happy occassion but a little sad. I miss that little guy who thought I hung the moon. LOL!

Well, Hannah and I have recreated the Uno Moo game. We've made new rules and are just having a blast playing. Sponge Bob memory is fun too. I purposely mismatched some to see if she'd catch me and you better believe she did. She's a hoot!

Better get busy and do something besides play around here today I guess.

God Bless!

Tuesday, December 29, 2009

The chair...

It's been another amazing couple of days. We got to meet with some incredible people again yesterday. They brought Hannah a new chair. I'll post pictures. The boys got to meet the people that blessed them so much this year. It was just another incredible day.

Kyle and I went to get the girlfriend last night so she'd be here to celebrate his birthday. I can't believe my baby will be 18 tomorrow. They grow up so FAST!

This morning Hannah and I ran some errands. I had a great time letting her choose items and put them in the basket. When we got to the check out Hannah said, "hello mam, how are you?" I was so excited. I know the checker thought I was nuts. Then she said to the man carrying out our groceries, "hello mam, how are you?" So funny!

Other than a cold Hannah's been well this holiday and we are so very thankful! I hope everyone is enjoying their holidays!

Saturday, December 26, 2009

Our Christmas to Remember...

I apologize if this is too long. There is just so much to this story. I had to add in some history so everyone could understand. Some of you may read repeated news. Sorry.

Wow is about the only word that I have that even remotely describes this Christmas for us. Wow God…Wow people of God…Wow..Wow..Wow!

I’m writing this from a personal view of what has transpired. However, this was not about me. It was about what God did for our family. The best gift I got is a faith grown.

Those of you who know me even a little know that I am a “fix it” person and that I’m painfully independent. I’ve spent my life fixing things. The last two years has been one of situations and circumstances that are just not in my power of control to do a thing about. It’s been frustrating and scary to me.

Hannah’s health has always been hard to manage but when she had that 2 ½ hr seizure on July 17th 2008 and we almost lost her, things changed in me. Then it happened again and again and we had 6 of those among many other smaller incidents in the next 18 months. A fear like I never knew crept into my life and I felt like things were spiraling out of control. I did not want to lose my child. I went into the “fix it” mode that I had always went in when things weren’t going “right” and nearly drove myself crazy with it. THIS was something that I could not fix. I had to leave it in God’s hands, trust him to direct us, the doctors, her therapists, and teachers. I’ve been a Christian almost my entire life but my relationship with God has been in a growing stage lately. I’ve watched others in their relationship and saw something in mine lacking. I wanted what they had. I’ve felt like I’ve gone back to scratch with God and it’s been an amazing experience. It’s definitely a good thing I LOVE to learn. 

We lost Billie in February and it was devastating. Billie and I had our moments of frustration with each other but those times were few and we really shared a fun, loving and respectful relationship. I miss her a lot. It’s been hard not having her here.

Then in October after years of going to a doctor who would pat me on the back and tell me that my symptoms were normal for someone with my stress load we finally got some answers about my own spiraling health. It’s a story in itself how I came to go to another doctor who listened to me and got to the bottom of what was going on. It was such a relief to know that I was not lazy, depressed, or even just tired. Blood work was ordered and a virus discovered. Treatments were ordered, and a picc line put in place. 21 days of IV treatments 3 times a day done and I’m feeling better than I have in 9 years! I was diagnosed with CFS(chronic fatigue syndrome) and even though it is not cured completely and will have to be managed with diet, exercise, supplements, and stress reliefs I am excited to feel better than I have in a VERY long time.

All of this medical stuff has put a horrible strain on our finances. I do not say much about it because we manage for the most part. We struggle most of the time to meet the medical needs of Hannah but to add mine to the mix…it was not going to be pretty. I can’t work right now because of the demands of Hannah’s health. I have to be available even to run to the school in a minutes notice. I have had garage sales, sold things on ebay, and even have tried my hand at secret shopping.  Add to all that, the economy with no raises, insurance premiums drastically increasing and then copays, deductibles, and out of pockets going through the roof, it just makes things tough.

When we started thinking about Christmas this year it was impossibility. There was no money for it at all. We never buy the kids much but there were no funds for even a few gifts. My heart was heavy because Kyle turns 18 on the 30th and will be going off to college, military or whatever he decides to do. This was basically his last Christmas at home as a child. It was also their first Christmas without nanna. She had been with them for EVERY Christmas they had ever had. I sat on my bed feeling intensely sad. As I said, my relationship with God has been in a growing stage. (I hope it always grows like this) Through this I have just started talking to God about everything. Every hope, dream, hurt, or disappointment. I started listening to a song by Kutless called, “What Faith Can do” over and over and over. I remembered KLTY’s Christmas wish and thought maybe there is someone out there that could donate some tickets to the boys for Holiday in the Park so they can at least go have some fun and I sat down to write the letter. I decided against sending the letter because there are just so many people in need and much more needy than we are. I got up and cleaned house listening to “what faith can do” over and over and over again. When I sat down again I decided why not just send it and see what happened.

Between sending that letter and Thanksgiving I started treatments. The last day of school before Thanksgiving break Hannah’s teacher asked me to meet her at her car. I got there and there were two baskets of stuff. One was a basket of goodies for Hannah and the other was a basket of food. Also there was a card with money in it. I was overwhelmed. Hannah’s teacher’s neighbor had adopted us for Thanksgiving. We were so touched that someone would help us like that.

We went to my brother’s for Thanksgiving. I was near the middle of my treatments and I was MISERABLE. To get any relief I had to lie down. Once I lay down and did absolutely nothing I felt better. Needless to say I was useless and my sister in law did everything. I cried most of the way home because I felt so bad and was afraid I would never feel good. It was probably the most hopeless I’ve ever felt. We had been home maybe an hour when my phone rang. I didn’t get to it in time so I had to listen to the message. I just sat on the edge of my bed with my mouth hanging open thinking….WOW! The message was from a woman who had been out shopping with friends and pulled my letter from KLTY’s Christmas wish book. I was so excited! My boys were going to get tickets to Holiday in the Park! I told David and let him read the letter I wrote real quick. He had no idea what I had done. LOL! (that’s what happens when your husband is an IT manager whose company is in the midst of a huge relocation. There just isn’t enough time in a day to share everything you need to!) I composed myself the best I could and called her back. I will never forget that conversation. She asked me for a Christmas list from the guys and Hannah and I said, “Well, I just asked for Holiday in the park tickets”. I think she chuckled and said, “I know…those are done…get me a list…we want to do more.” She sounded so excited and happy, and those in the background also sounded like they were having a great time! I could hardly talk through the tears as she shared with me that her little sister had seizures and she could relate to my guys. Then my heart almost stopped as she told me about the group that would be helping us. They are a group of neighbors/friends who walk their dogs together. They had no idea about Koolio at that time. I told her about Koolio a little and then told her to go to Hannah’s blog to learn more so I wouldn’t keep her all day because you know how I get once I start talking about Koolio. LOL! I got off the phone and danced a jig! It felt so great to know that Christmas was not going to be depressing in our house this year!

David and I talked to the guys and asked them to make a list. I KNEW that was going to be a tough one because they know how tight financially things have been for us. David reminded them to think positive and write down what they really wanted. When I first got the list I was like, “I cannot send this to them” Teenagers stuff is not cheap. For a moment I considered altering it and then decided against that. I just sent it. I began interacting with who David quickly dubbed, “Santa Ann”. Almost daily there was a development of some sort. It was so exciting! I blogged about how Billie would be fussing at me for throwing out our Christmas tree before I had a replacement. That’s when we learned about “Santa Karen”. She and some teachers from Kerr Elementary purchased us a magnificent Christmas tree. (It has colored lights, which is what Zach wanted. They could not have possibly known that.) We have a host of “Santa’s” by the way. It’s unreal what this group of friends/neighbors did together. Karen’s golf team also did some amazing stuff for a fellow student that they probably will never even meet. We’ve been unable to part with the money it would take to purchase a class ring for Kyle. This group of kids came together and gave the money to purchase that ring for him. We later learned that when the class ring company heard about what these kids did they decided to donate Kyle’s ring so the money the kids gave for Kyle’s ring went to purchase his senior pictures. It’s just been one blessing after another. Just incredible!

Last Sunday 5 of the “Santa’s” in this group came to Hillsboro to meet us for lunch at Black Eyed Pea. We had the boys go elsewhere so they wouldn’t know what was happening. David, Hannah, Koolio, and myself met them. It was so exciting to get to meet them face to face. It felt like we were meeting with a bunch of old friends we hadn’t seen in a long time. We had a great time at Black Eyed Pea eating and chatting. Hannah just lit up when everyone sang “Santa Claus is coming to Town”. We then left and they followed us home.

Nothing could have prepared me for what would happen next. These ladies began bringing in the most beautifully wrapped packages. There was not room enough under our tree for all of them. They just kept coming and coming and coming. Not only gifts but boxes of cookies and a home made lasagna. They gave us a gift card to Wal-mart to buy groceries and stocking stuffers. I have never been so lost for words. Hannah was adorable. When the boys came home she told them…”people came…brought me pretty things.” I wish I had a picture of the boys’ faces when they walked in the door. They have NEVER seen so many presents and certainly weren’t expecting even a couple of presents this year. I loved seeing the expressions on their faces.

We thought that the lasagna was the neatest thing and it really showed us that God was so much a part of what was happening. EVERY year Billie would make David a home made lasagna between Thanksgiving and his birthday. Even in the last couple years when she wasn’t feeling well she’d have me help her and we’d whip one up. There is NO way the lady that made it could have known that David would be missing that lasagna this year.

In the midst of all this a friend’s Sunday school class gave us an offering to help buy groceries or gifts. She also gave us some gifts to give Hannah. Hannah’s teacher’s neighbor gave us some gifts for Hannah too. It was amazing.

On Christmas Eve David and I sat the boys down and told them the story and they were pretty much speechless. Just so amazed that someone cared about what they have gone through and wanted to help. We said a prayer of Thanksgiving and let them open a couple gifts. I think I can honestly say that these guys had the Christmas of a lifetime. They got a Wii, guitar, tv, and so many other things as well as tickets to Holiday in the Park! Not only did they get so many surprises but Hannah had an amazing Christmas too. I think they enjoyed helping her with her stuff almost as much as they did opening their own. She got a sponge Bob comforter set. I didn’t think I was going to get her out of it once we put it on her bed. She LOVES it. She got Sponge Bob slippers, pillow, game, and shirt. She’s in Sponge Bob heaven! She really had so many wonderful gifts including some special hats! I wish y’all could have seen David’s face too. He opened his gifts and in one box was Stars tickets and I thought he was going to go into cardiac arrest over that. The very next package he opened was Mav’s tickets. I thought for sure we’d have to call 911 then. It was priceless. Koolio and myself got gifts too. I got a great outfit and a beautiful cross and Koolio got a tug toy and neckerchief that matches one of Hannah’s hats. So adorable! It was just all a tremendously amazing.

The best part of all this for me was watching the joy in the faces of my family after all the months and months of distress we’ve experienced. It was incredibly amazing to see so much hope born in our hearts. It was a boost; something to inspire and keep us going through any tough time ahead. I can’t remember a more stress free holiday.

I could say so much more and I’m sure I’m leaving out stuff. I know that not only was this experience faith building for me but for David and our kids too. I watched it build in their faces as the realization of what was happening set in. We are blessed!

To all our Santa’s, I want to thank you from the bottom of my heart. You did not only provide Christmas for our family, you breathed hope into our lives. I can never thank you enough.

To the very reason for this season….Thank you! Thank you for the lessons you’re teaching me. Thank you for your patience as I learn those lessons. Thank you for loving me where I’m at and thank you for loving my family even more than I do! Thank you for coming to this earth, for dying on a cross, and for resurrecting so that I can know redemption. Oh, how I need redemption! Do me a favor please…give my Billie a BIG hug from me!

God bless all of you and Happy New Year!

Friday, December 25, 2009

Picture 269.jpg

I am trying to link the slideshow to this site but haven't got it to work yet. You should be able to view photos at this link though.

Click here to view these pictures larger

So Blessed

Our family was so blessed this Christmas...more to come but wanted to share a few photos.



Wednesday, December 23, 2009

Shorts and brownies

Hannah's cold is getting a little better everyday. It's certainly not slowing her down. The kids got a gift card to JCPenney from both of David's aunts so I took them to spend them yesterday. Hannah announced as we entered the store that she wanted some shorts. This girl LOVES her shorts. I said, "Hannah sweetie. It's winter time. We can't buy shorts in the winter." I really didn't think there would be any so I wasn't too worried about it. We began looking at all the pretty clothes and lo and behold she found some shorts, took them off the rack and announced, "me some shorts." I blew it off and put them back on the rack and continued looking. She took them off again. I put them back on the rack. Finally for a third time she got them off the rack and said, "me some shorts!" How could I not let her get them!?!?! They really are quite cute. They are bermuda with sequins and a peace sign on them. She had to wear them the minute we got in the door. I was so excited to see her showing interest and preference for something. I'm sure we'll have some battles in coming days but I'm even looking forward to that. LOL!

This morning Hannah and I baked some brownies and took them down to the pharmacy where we get her prescriptions filled. She told them Merry Christmas and they were thrilled to see her. She was so excited to take them some "cake".

I can't believe tomorrow is Christmas eve. My guys want Thanksgiving for Christmas so I purchased a turkey breast, ham, and things to make some dressing yesterday. Kyle asked for a cheese cake today so I may try my hand at that or I may just purchase one. LOL!

This has been the most stress free Christmas I think I have ever experienced. It's an amazing feeling and we are so thankful. David will be home for the next 5 days and we are all so glad. We love having him home. I know he's ready for the break too.

I hope everyone has a wonderful Christmas. I can't wait to get to tell y'all about ours. I'm going to take plenty of pictures!

God Bless!

Monday, December 21, 2009

Torn about the epi visit today

Well...today's appointment was interesting. First we had to have a blood draw and I'm telling you this girl is such a trooper. She watched the lady stick both times and didn't even flinch. When it was done she told the lady Merry Christmas and bye bye. The epileptologist has decided against a hospitalization and testing in January. It's looking like we'll do it in June instead. There was a lot of conversation today about quality of life, etc. Hannah's still having seizures but she does have better control and we have not experienced a status since June. Versed, so far is working and stopping the prolonged seizures. THANK GOD FOR THAT! He suggested that if we can keep the seizure control we have now or even improve it, we can afford to step back and really do some focusing on development. He suggested we see a neuro psychologist, and mentioned the Child Study Center in Fort Worth again. I'm going to look around some just because I've heard both good and bad things about the Child Study Center, and I know the price quoted to us for first visit and testing was rather steep even with our insurance. I want to see if there may be better places and more reasonable places to have the same things done elsewhere. So, if any of you know of any or have any recommendations I'm all ears!

I do know that we need to focus on development and that we have focused so much on medical that a lot of things we could do for our girl's cognitive abilities have been put on the back burner. Dr. Malik talked today about how he felt that we can afford to take a little more time to focus on some of her development so she can have the best quality of life possible. If she starts having the status seizures again then we'll change the plan. It was hard to be upset at him for taking this approach because I could tell he was really thinking about Hannah and what was best for her. He really wanted to give her a break from medical procedures, etc. Felt she deserved and needed it.

I'm torn because a big part of me wants to do both. I want to work on the development and the medical. I want to find complete siezure control and still do all we can to help Hannah's quality of life and development. However, I'm deciding to see this as the blessing it can be. I am going to be thankful that we have gained enough control over her seizures that we now can look to improving the other areas that have been neglected. I had the best time with Hannah today and all the way home I thought about a day when things were not like this with her. She barely spoke, she hardly played with toys, she wasn't even aware of Christmas and could have cared less about the gifts under the tree. Not this year. She's so excited and we're all loving it.

She's still not feeling real well but tonight has been better than the last few nights. She's coughing less and was more playful today than she has been. I'm hopeful that she'll be close to 100% by Christmas.

I really thank all of you for your prayers and support. Please continue to pray for Hannah's health and improving seizure control as well as our efforts to help her developmentally. It can be rather daunting when you start tryinig to find the "right" things to help a child with autism. I can spend hours and hours and hours researching and reading about all the theories and I enjoy doing that, but it is overwhelming and so hard to decide a direction to take.

I'm rambling on tonight. Sorry. Just so much to think about...Love you all!

Amazing day...

It's after midnight and yep, I'm still awake. I can't sleep. I have had one of the most humbling and amazing experiences of my life today. Can't share it just yet but will soon, I promise.

David, Hannah and I got to meet some really wonderful people today. Our lives were so touched. I do not even possess words to express how we feel. It's just an incredible feeling.

Hannah really enjoyed herself today. She's not feeling very well at all. Has a really nasty cold. She's coughing her head off as I type this. Still she had a blast eating at Black eyed pea and I so enjoyed the light in her eyes when everyone at our table sang, "Santa claus is coming to town". Our visitors brought her a gift and we've played with it most of the afternoon. She is loving taking everything out of the bag and putting it back in. LOL! Hey, it is working on motor skills so we'll take it!

I have all three kiddos at home and too myself starting tomorrow. I love those kinds of days. David has a short work week too. The kids have plenty of goodies to help themselves to this week thanks to our visitors today. It's feeling Christmas-y around here and I'm loving it!

I hope you all have a wonderful week. Pray for our angel girl. She goes to the epileptologist tomorrow. I sure would like for this cold to be better before Christmas too. Love you all!

Sunday, December 20, 2009

Excited and still not well

We're excited about getting to meet some "angels" today. Can't wait! Hannah is still not feeling great. I think she has a bad cold and it's turning into URI. It usually does. Doing everything to keep it from getting worse. We have an appt. with the epileptologist tomorrow. Happy Sunday!

Saturday, December 19, 2009

Hannah's sick...

Hannah's been fighting a cold for days. Tonight it's really pretty bad. I had to give her klonopin. It's always worse at night. :(

Friday, December 18, 2009

Thursday, December 17, 2009

Pictures from party

These are pictures from Hannah's regular ed class party today. The little girl in the pictures is her BFF Jeida. Jeida is an adorable regular ed student who is a great friend to Hannah.


Busy Busy week...

Man, this has been a BUSY week. I feel like I've just ran around here and there and done absolutely nothing too. CRAZY! This week has been a blast though. Hannah has been a hoot. On Tuesday I sat down beside her in the cafeteria when I dropped her off and she "snubbed" me. I asked her teachers if they saw that. Then she scooted over next to me and asked me for a big hug and then she said, "I'm being kind!" LOL! Yesterday she told her teacher that life was dangerous. Don't ask me. I have no idea where that came from. Today she had her parties at school. She had a great time and enjoyed the mini cupcakes immensely. She made a paper chain at school for her class tree and got to bring it home today. I was busy and walked by our tree and there it was on it. She had opened her backpack and got it out and put it right on our tree. I LOVE IT! I'm so excited about her interest in things this year.

Koolio started the week out sick but has seemingly recovered. I'm so glad. I felt so bad for him.

I can't believe that this time next week we will be readying for Christmas day. The boys want me to cook Thanksgiving for Christmas. Aunt Christy did a great job on Thanksgiving but they didn't have left overs so they didn't get enough. LOL!

I'm excited about the holiday's and that is greatly due to all of you. I know the reason for the season but this year I have experienced the reason for the season. I will never forget Christmas 2009. Thank you!

Tuesday, December 15, 2009

Koolio is better.

Koolio is on the mend. He's eaten rice today and handled it well. I'll add chicken and rice tonight. Man, I hated him being sick. It's just like one of my kiddos. Made me so sad.

Thank you for your prayers for our hairy kiddo!

Monday, December 14, 2009

Koolio's sick :(

Koolio has a very bad upset stomach. I'm worried and if he's still not good in the morning we'll have to go to the vet.

David had a meeting at the Mav's game tonight. The boys and I are jealous. LOL! I hope he has a good time. He deserves it.

Hannah has had a really good day and I'm hoping it continues to the night. She's been worried about Koolio. She's been giggly too though. The girls a hoot! She took her shoes and socks off in the van on the way home and said, "Ms Hannah, shoes and socks girl!" Then said, "Mean Teacher!" I had to text her teacher and tell her. It was so funny.

I did not get much of anything accomplished today. I am feeling better and I'm trusting the doctor that I am going to continue to get better and better like he said I would.

portable dvd question...

We are going to be in the hospital early January for up to two weeks. There will be tests and going from one waiting area to another. Lots of waiting. I was wondering if anyone has one of those Fisher Price portable dvd players and if they are worth the investment. It lo

www.toysrus.com/product/index.jsp?productId=3137021

An email...

I got this in an email today and thought it was great!

An older, tired-looking dog wandered into my yard.
I could tell from his collar and well-fed belly that he had a home and was well taken care of.
He calmly came over to me, I gave him a few pats on his head;
he then followed me into my house, slowly walked down the
hall, curled up in the corner and fell asleep.

An hour later, he went to the door, and I let him out.


The next day he was back, greeted me in my yard, walked inside and resumed his spot in the hall and again slept for about an hour.

This continued off and on for several weeks.

Curious I pinned a note to his collar: 'I would like to find out who the owner of this wonderful sweet dog is and ask if you are aware that almost every afternoon your dog comes to my house for a nap.'

The next day he arrived for his nap, with a different note pinned to his collar: 'He lives in a home with 6 children, 2 under the age of 3 - he's trying to catch up on his sleep. Can I come with him tomorrow?'

Sunday, December 13, 2009

Uneventful...

Hannah had a pretty uneventful weekend. There were some complex partials and absenses but nothing we couldn't handle thankfully. We have had to sing, "Santa claus is coming to Town" a million times but I don't mind. We had to take a "nap nap"(there is no sleep involved. A nap nap is mom and Hannah laying down with covers over our heads and singing and playing. LOL) I would not trade those moments for anything in this world. Sometimes I wish Hannah were my oldest because she has taught me so much about appreciating the small seemingly insignificant things in life. I often wonder how much more I would have enjoyed my boys had I learned these lessons when they were small. Not that I didn't enjoy them. I did and do, but it was different. Small things were sometimes overlooked and I can tell you that I now know I missed a lot of joy reaching and looking for the "big" instead of celebrating the "small". No regrets though....life's about learning.

Uncle Joe and Aunt Shirley came down yesterday for a first visit since Billie's passing. It was great to see them and although we were sad that Billie wasn't here we felt her with us and had a good time visiting. Hannah really enjoyed her Aunt Shirley and giggled almost the entire visit. She has talked about them all day today and just giggled.

This is the last week of school. It'll be a busy one. Not only is it the last week of school but it's the week of David's company party at the owners house. I'm going to try to go with him. Kyle is going to babysit, I think. He does a great job. I just get so nervous leaving them and being an hour away. Kind of hard to enjoy yourself. LOL! So, we make it through this week and I have all three kiddos to myself for a couple weeks. So much fun!

Hope everyone is enjoying their holiday festivities. Thank you for the continued prayers and support!

Friday, December 11, 2009

It's been a seizure kind of day...

My poor baby! Hannah started out the week bad with lots of seizure activity and then kind of mellowed the middle of the week but today has been another day full of seizures. Praying the worst is behind us.

Good news....

Well, I went to the doctor yesterday and my blood work came back good and my picc line was removed. The 21 days was all I needed at this point. I will go back in a month to make sure the viruses are not recycling but it's looking good. I was so happy to have that line removed. I thank you so much for praying with us that the tx's would work. He said that I should gradually continue to improve over the next 6weeks.

Now I can at least maybe do some Christmas baking. I'm not going to make any of Billie's favorites in hopes that I won't bawl through it. LOL! It's just so much harder than I could have ever thought it would be. I went to pick up some cat food the other day and walked by a jovan display on my way to the cat food and the tears just sprung up. David's aunt and uncle are going to come down this weekend and I was driving thinking about how excited she'd be and I cried. It's funny but sad. For the first time in 20 years I won't have a pair of PJ's from Billie under the tree. She always tried to suprise me but she just couldn't do it. I am too nosey and she was too excited about things not to spill it. LOL! Wow! For the first time in David's entire life he won't get a gift from his mom. Man, this stuff is hard. So many firsts. We just have to keep thinking of how amazing a time she's having in heaven even though we miss her like crazy and wish she were with us!

Hannah had a rocky first part of the week but is having a better second half of the week so far. She's been holding her eyes though which is concerning me some. She won't tell me if they hurt, etc. She goes to the doctor on the 21st and I will definatley be asking him to see what he thinks.

I'm not sure how much I'll get to blog in the next few weeks. The boys are in school half days next week, there are school and club parties next week. Then they are out for their holiday break and I will stay pretty busy. I will try to get on several times at least and update things. I just don't know what the next few weeks will entail. Thank you all so much for all your prayers and support. It's been lifesaving to our family. To all the angels who have never even met our family but have reached out a helping hand when it is greatly needed I just cannot tell you how much you mean to our family and how in awe we are of what God has done through you. You breathed hope back into our lives. Thank you! I hope we get to meet some day soon.

Merry CHRISTmas!

Wednesday, December 9, 2009

Not feeling well...

This morning started out pretty good. Hannah started having absense seizures at school and then Koolio barked and growled at school so I went up to check things out. It ended up being the wind blowing the underpinning on the portable building the class is in, I think. Hannah ended up doing better after a bit. We think she may be having some low blood sugar issues because she refuses to eat breakfast. We're working on a solution. Then I left for my appt and got my bandages changed. On the way home from that I got very sick to my stomach, etc. I'm praying it's a stomach virus and not anything wrong with my line. I see the doctor tomorrow to see what the next steps are and I'm praying HARD that the next step is to remove the picc line. I want to cook Christmas dinner for my guys! Thank you for your continued prayers guys! They are needed and very appreciated.

Tuesday, December 8, 2009

Better Afternoon

Hannah had a better afternoon. Thank you for your continued prayers.

School Seizure

Hannah is having a rough day. Seizures at school. Seizures last night. Koolio has been working over time the last few days. Please keep her in your prayers.

Monday, December 7, 2009

Sunday, December 6, 2009

An Autism kind of day...

Today has been an autism kind of day. Lots of meltdowns. Koolio has worked overtime today. I'm a little nervous because sometimes these kinds of days lead to a really bad seizure episode. So far only absenses thankfully. I'm praying things settle down and Hannah has a good night.

I'm feeling really fatigued today. I should finish my treatments this week and will talk with the doctor about blood work results, and if the treatments worked plus future management of symptoms. Please pray I'm in the 70% that has successful results.

We put up our new Christmas tree yesterday. I keep saying we've been visited by angels and we really have been and continue to be. I hope to get to share the whole story after the holiday's but until then you will have to put up with my partials. We threw out our tree last year because it just needed to be replaced. Our medical expenses have been and continue to be unreal. There is just no "extra" funds. A group of teachers from Kerr Elementary in Allen heard about Hannah and our situation and they purchased us an amazing Christmas tree. The kids were so excited when we put it up yesterday. I'm going to post pictures soon. My camera batteries went dead yesterday and I haven't been to the store yet but as soon as I can I will post the pictures for y'all to see. Silent prayers have been answered in this household. It's amazing and we're praising God!

Hannah goes to the epileptologist on the 21st and he'll fill me in on what to expect when we go in on the 4th for her hospitalization. While we are there they will do some other metabolic testing. We're trying to just live in the moment and trust God to get us through whatever happens. Your prayers help so much. Thank you!

Friday, December 4, 2009

Making Jewelry

Hannah was given a basket of goodies from a sweet family last week for Thanksgiving. In the basket was pop beads to make jewelry. That's what Hannah and I did tonight. We made a necklace and 5 bracelets. LOL! This girl loves bracelets. Thought Y'll would enjoy seeing our handy work!




We're putting up Christmas decorations this weekend. We are feeling so blessed. Thank you so much all our angels. Our family is forever grateful for your kindness.

Missing Nanna(Billie)

I think Hannah must have dreamed about her nanna last night. She woke up asking for her. That's the first time that has happened in a LONG time. I certainly do not ever want her to forget her nanna but having her ask for her is so hard. Especially when you have a child that just can't understand. Nanna was Hannah's hero. I know the loss I feel and can only imagine what my kids feel. And poor David. He mourned for his brother every year and now his mom is added this year. I've heard all my life that it gets easier but I don't know. I don't think it will. We miss her so much. I miss her fussing at me and teasing me. I miss helping her shop for everyone. I miss her excitement and joy for the holidays. I miss her Christmas list that she made for me every year. I miss the UPS man at the door every other day with a package. I just miss her. I just keep reminding myself over and over that she is with the very reason for this season! She gets to sit at His feet and is surrounded by an eternal joy. She's having the ultimate holiday! WE love you and miss you!

Thursday, December 3, 2009

Santa

Every year I set myself up to not be disappointed in Hannah's lack of interest in Christmas. I've caught myself making comments about how she could care less if she got anything and that I could give her a sack of beads and she'd be happy. Shame on me, I know. OMG...she is so interested. I can't wait to get out our decorations and put them out now. Of course she probably won't stay out of them but I don't care. We found a blown up santa on Craig street and I had to drive by it twice on the way home so she could see the santa. Someone bought her a pair of reindeer PJ's and she is wanting to wear them. I'm happily obliging since the only other pj's she'll wear are shorts. She also is really fascinated with gifts right now and exclaims loudly "oooooo and ahhhh's". I'm so happy today that she is excited about the things happening around her. This is going to be a wonderful Christmas I think. I want her to have the best time ever since she will be going in the hospital on the 4th of Jan.

Thank you for your continued prayers! Love all of you and hope you are having a Merry holiday season. Remember the reason for the season! :)

Wednesday, December 2, 2009

"I'll Fly Away"

I've been at the doctor's most of the day. Hannah had a big absense seizure day at school but made it. We finally got home and she's in her room singing "I'll Fly Away" to the top of her lungs. She sings every word too...verse and chorus. Oh, and we can't forget to add the "in the morning" part. It's so precious to hear. So far so good on my treatments. Next week will be the big one to decide if more or needed or if the 21 days was enough! Believe with me it is enough. I want to get this pic line out of me. LOL! Love you all!

Tuesday, December 1, 2009

Jingle Bells

Jingle Bells...Jingle Bells...Jingle all the way...to school. LOL! Hannah has definately gotten in the Christmas spirit. We've had to sing Jingle Bells on our ride to school the last couple days. Jingle bells and santa claus is coming to town are her favorites. I love to watch her enjoy things. My video camera phone only records 10 secs but I'll try to get at least that much for y'all to see. It's just so adorable. She loves to go "ha, ha, ha" and "hey"!

Zachary is giddy about Christmas too. He's 16 but he keeps trying to help me find things to sell on ebay to have more money to buy presents. It's really quite funny. I tried to get them to pull stuff for a garage sale a few weeks ago and it was like pulling teeth. Now things are coming out of the woodwork. I guess I should wait till almost Christmas to have a garage sale from now on. LOL!

I don't want to jinx it but Hannah's been doing good. She's happy, seizure activity has decreased quite a bit and she's been well. She does that. Has these good times in between the storms. I'm thankful and am prayerful that these "good times" last us right through the holiday's. We need the storm to happen on the 4th of Jan. when she's in the hospital. Until then...let the good times roll! :)

I'm feeling better. Go back to doctor tomorrow to have dressing changed and blood work. Only 9 more days to go we're praying!

David's company is in the middle of a relocation project from one building to another and it is stressful. He could use your prayers. The biggest part will likley happen right in the middle of Hannah's hospital stay in January. He'll be super stressed. He's amazing at his job though so I know he'll handle it and with prayer support it's likely to be one of the easier things he's done.

Thank you so much for your continued prayers and support. We couldn't make it without them. Hoping everyone is enjoying getting ready for the holiday's! I'm starting to. Love to all!