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!

Sunday, November 29, 2009

Thanksgiving

Wow! What a range of emtoions this holiday brought.

Hannah had a great holiday for once. She had a few moments but they quickly passed and I think she had a great time seeing cousins, aunts and uncles. It was interesting to hear the comments from people that haven't seen her in a while how much she has changed, especially socially. She's going through a streaking stage, and I had hoped we'd get through Thanksgiving without a streak but we didn't. LOL! We're all in the livingroom and Hannah comes in topless. I had to be thankful that it was just her top and not anything else. :) All in all I think she had a great time and for once she was well during the holiday! Thank you LORD!

I started my IV infusion treatments Thursday before last. They told me to take it easy and I thought I had been. Evidentally my easy and theirs are very different because I found myself very sick Wednesday after driving to my brother's from Hillsboro. I felt horrible. I barely made it through Wal-mart with my sister in law to get a few things we needed. I called the nurse and she felt like I was overdoing it and that I needed to take it easy. Thanksgiving day I was totally useless. I didn't do a thing. My poor sister in law did it all. Still I guess being up all day visiting, etc. was too much and on Friday I found myself feeling horrible again. I cried most of the drive home thinking I'd never feel good again. I haven't done a single thing since being home trying to get in as much rest as I could to see if it makes a difference. If I'm not feeling better by tomorrow I'm calling doctor back. I have to take care of my family.

David went to visit Billie's grave while we were in town. I didn't get to go. It really bummed me out. I miss her so much and it's not easier. I really have a new appreciation for people who have lost someone they are so close to. She loved the holiday's. We were laughing the other day because I threw out our Christmas tree last year and she was one to not throw something out until you had a replacement. She'd be giving me an earful about now. LOL! I know she's having the ultimate Christmas celebration today and I have to be happy for her.

In the midst of all of those things we got amazing news yesterday. I'm not free to share it right now but it was news David and I could use and has relieved some of the heaviness David and I have been feeling. We have been visited by angels lately. Help with food and gas money for travel. Hannah had a friend pass on her Strawberry shortcake stuff and someone gave her a basket of goodies too the other day. She's been in hog heaven! I'm just so thankful. I hope eveyone had a great Thanksgiving and you enjoy the holiday festvities leading up to Christmas. Thank you so much for your prayers and support. Please continue to pray for Hannah's health and pray that these treatments will work for me and I won't have to do more than the minimum.

Happy Belated Thanksgiving! Love you all!

Friday, November 27, 2009

Koolio Chapman | A Dog Named Christmas

Koolio was entered in this contest. Please vote for him and pass it on and ask all your friends too as well.

LOL! David doesn't like the muddy picture. I thought it was cute and would stand out.

Koolio Chapman | A Dog Named Christmas

Posted using ShareThis

Sunday, November 22, 2009

Really good week...

Hannah had a great week. There was very little seizure activity and she was well all week. I'm so thankful for weeks like these. They are so few and far between. She was a delight all week long, making us laugh so hard we cried sometiimes. Yesterday she started making farting noises with her mouth and would say to whoever was close, "Shew Wee David! You stink!" It was a hoot. I think she even entertained her teachers this week too. I'm so glad she is with people who enjoy her. It sure makes life easier for me.

Koolio finished his first week at school and it went great. He was VERY happy to be back with his girl everyday. He loves school as much as she does. He also really seems to enjoy the teachers. I think they are enjoying him too. He's such a sweet goofy dog.

It was a rough week for me personally. I had a doctors appt on Tuesday, then again on Wednesday and then Thursday I went into the hospital to have a pic line put in so I could start IV infusion treatments for 21 days. Hopefully I'll feel better than I have in years when this is over and it would have been worth it. I've learned more about viruses the last couple months than I ever care to know. I'm an avid handwasher/germ x user now and forever will be.

I can't believe the holiday's are upon us. Part of me wishes we could just skip them this year and then the other part of me wants to celebrate them in honor of Billie and her love for them. I still miss her so much. It'll be the last one with Kyle as a "kid" too. Hannah's already singing Jingle Bells and Santa claus is comign to Town a million times. So, I'll do my best to muster up some enthusiasm and have fun. This economy just really stinks. No raises or bonuses this year and a mountain of medical debt. Oh well...it could be worse. :) Time for me to get creative!

I'm wondering if I should attempt taking Hannah to see Santa this year. She is so much more aware of the holiday now. It is so fun to watch someone give her something. When I bought her school shoes a few months ago and she opened the bag you would have thought I gave her a toy or something. She was so excited.

Hannah will go in the hospital Jan. 4th for up to 2 wks. They will take all her meds away and try to make her have seizures in the hospital so they can record them and see what is happening in her brain. From that we could get some valuable information and may have more options to stop the seizing. Surg, etc. For the first time in my life I'll be prayinig she has a seizure. It will be a pretty miserable time but a neccessary one. We'll appreciate your prayers.

Everyone have a happy Thanksgiving. I'm so thankful for everyone that cares about our girl. It's because of your care and prayers that we still have her. I'm convinced of it. Thank you from the bottom of my heart.

Saturday, November 14, 2009

Little Injun

This has been a week of my realizing how impatient I am and how other people do care and do want to help, and my letting them. Hannah has been sick for almost two weeks. She is doing better but she's still not 100%. Hannah's school staff is amazing. From her teachers to the administrators and I realized once again how what they do is so much more than a job. They care and want to help.

God has consistently placed people in our life that have offered a helping hand when it is needed. I'm so in awe at the people who are allowing themselves to be used to meet the needs of my family. This has been a week of us being visited by angels, and I hope I never forget the lessons I learned. Letting people help is not easy for me. I'm painfully independent. I'm learning though and will continue to learn as long as God wants to teach me.

Koolio starts school on Monday. We'll start training the staff on Monday. He'll be VERY ready to go to school. He has been so sad when Hannah leaves in the mornings.

I was at school a lot this week and one of the days Hannah made this hat. I had to grab a photo. So cute! My little injun...

Monday, November 9, 2009

hallucinating and crying

Hannah woke us up hallucinating and crying this morning. We think it's from the use of klonopin so much the last few days. Prayers would be appreciated.

Friday, November 6, 2009

Another seizure at school....

I got a call. Hannah was seizing again. Versed stopped them again thankfully. We're home. She's got bronchitis. We are scheduled to go inpatient at Cook's on January 4th for 5 to 9 days to do extensive testing to hoping get some information on what is causing all these problems. Please keep her in your prayers!

Saturday, October 31, 2009

H1N1

After much prayer, research and counseling we opted for Hannah to get the H1N1. She got both it and the seasonal flu shot yesterday. I held my breath most of the night praying she'd not have any seizures. We gave her a klonopin when she went to bed just to have some added coverage. So far she's done fine. I just never know what to do...if she gets the shot, people could be right and it'll cause all kinds of problems. If she doesn't and gets H1N1 then it's very likely to seriously affect her because it's known to reak havoc on kids with health problems, etc. We just felt like our chances were better with the shot than without it.

Hannah's doing fine. She has a little bit of a cough but it seems to be allergy related. Her schools fall festival is today and I'd love to be able to take her. Hoping she gets to go.

Koolio has not been going to school with her but will be soon. Just some details to work out and he'll be with his girl again. She's going to be so glad to have her buddy with her. They are really bonding well. He's starting to seek her out more and more. He's definately a family dog to though. He loves his daddy and his brothers. LOL!

I was diagnosed with CFS and treatments are ordered. It may be a while before I can do them but when I can, I will. Thanks for praying for me and please continue to.

Wednesday, October 28, 2009

School Seizure

Hannah had her first TC at school today. They said that she began seizing in the hall way on their way to lunch. By the time I got there it was over and the EMT's had her ready to head to the hospital. They did have to administer the versed and it WORKED. I'm so happy about that. The teacher said it worked almost immediately. I'm very pleased with the way everyone handled the situation. Even to the phone call I got about the ordeal. I know that my girl is loved, cared for, and in good hands. Right now we're praying and trusting God for an uneventful night!

Monday, October 26, 2009

Happy Girl!

Hannah's done well lately.  Only mild seizure activity and no major illnesses.  Keep those prayers coming!  She's been a lot of fun lately.  I keep thinking back on how things were when she was on keppra and thank God over and over we were able to take her off that drug.  We have our happy girl back.  We attended both church services yesterday.  Last night one of the elderly ladies hugged her and told her that she was pretty and fat.  Hannah said, "I'm NOT fat!"  It was so funny.  When we got home she was talking to herself and she said, "How'd you get so big?....I growed stupid!"  I'm not sure where that came from but it was funny to me.  This morning she hugged me and said, "thank you Lord for another safe night".  Talk about putting things in perspective!

Koolio isn't in school right now.  We are working on it though and hope he will be soon.

We've got a lot of medical stuff going on.  Hannah and I both are back and forth to doctors, etc.  Someone was talking about the holiday's the other day and I groaned within.  I'm not ready for them and I won't be I'm afraid. 

Thanks so much for all the prayers and support.  We really really appreciate them!     

Some photos

Thought y'all might enjoy a few pictures. 


This is how we found Hannah the other night.  It was before bedtime but she was tired and gave it up early. 
She still had her princess shoes on. LOL!  Silly girl!


This is why Koolio is bordering on overweight.  His girl feeds him half her food.  It sure has helped with bonding but
we know we have got to figure a way around her feeding him.

Sunday, October 18, 2009

Lost baby

I started miscarrying on Wednesday. I go to doctor tomorrow to see what needs to be done from this point. Thanks for all your prayers and support.

Tuesday, October 13, 2009

Life is never dull

Life is never dull is it? I am pregnant. Had my tubes tied after Hannah's birth but 1 in 200 still get pregnant. I'm the one. I have a doctors appt. on the 22nd to check everything out. Make sure it's not ectopic, etc. I'm shocked but not unhappy. I'm worried but trying desperately to leave it in God's hands. When we told the boys Kyle said, "you know mom, it was starting to get a little boring around here..."

Hannah's doing well. Her personality is really shining lately. She is a mess. She enjoys cooking which has me worried. I do not feel like I can leave anything on the stove unattended anymore. So far she's gotten over all the illnesses that have hit her fairly easily which is a HUGE blessing. We just pray and pray constantly.

I have several appointments over the next few weeks. I see an infectious disease doctor on the 20th. Apparently when I was pregnant with Hannah I got mono and it was never treated. My body was under so much stress that I never recovered. Hopefully he can help me feel better. Then on the 22nd I go to the ob/gyn. Then again the last week of this month(not sure of the date) I go back to the DO that I just started seeing.

I also have a stress fracture in my right foot from when Koolio took off all of a sudden and wrapped his lead around my ankle. It hurts horribly. Ugggh! The only thing I can do is stay off of it as much as possible. I have to buy some crutches and a foot boot.

We're still waiting on results of Hannah's metabolic tests. As soon as the results start pouring in I'll be sure to let y'all know them.

I'm working to keep my spirits up. It's not easy, but I know God has this all in his control. Please continue to pray for us!

Monday, October 12, 2009

Off Duty Service Dog Fun

So, Friday Zachary takes Koolio to potty and this is the result. The cooler air and wet weather excited him beyong measure. At this point it was too late to do anything so I just let him have fun. He was a mess to clean up! Thought y'all would enjoy the pictures.




Monday, October 5, 2009

Metabolic geneticist

On Thursday we had Hannah's appt. with the metabolic geneticist. She ordered tons of tests and gave me instructions to have more done during our next hospitalization. No new information. Just went over history and talked about possible disorders, etc. It will be weeks, maybe months before we get results.

Hannah was sick towards the end of last week and thorugh the weekend. She was doing better by yesterday. Her teacher said she is doing good today. She's been a mess lately. This morning at school she took my cell phone and wanted to call her daddy. I let her. It was the cutest thing.

Saturday, September 26, 2009

Happy Happy Happy

It's been a while since I have done an update on everything. Life happens so fast. One thing stays the same and that is that God is good and he's faithful.

Hannah has had an amazing week. As I drove to my doctors appt. yesterday I spent my drive time thanking God for our happy, joyous, energetic, and incredibly ornery angel girl. She was just so contagiously happy and silly all week long. Yesterday morning for some reason out of the blue she decided she wasn't going to put her shirt on until she said hi to sissy(David's aunt). I finally got the phone and called sissy and Hannah said, "hi sissy. bye sissy." handed me the phone and siad, "shirt on." It was hilarious! I LOVED it. I got a call from her teacher yesterday concerned because she was acting different. She had two small complex partial seizures that morning and she was acting out of character. I immediately got concerned and started asking questions. The teacher began to relay all the thiings she had been doing and I had to smile. It sounded like she was just having fun. Is it sad that when my little girl is so very happy it could be a sign of something brewing? To the teachers credit, she is doing what we asked her to do, and that is to let me know if she feels something is "off". You just never know with Hannah and it's important to make note of any difference in behaviors in case a status event occurs so we'll have something to put in our "possible signs of something brewing seizure wise" file. Anything that can help us "predict" one could be brewing and let us start intervention early is something we can use. Still it made me smile to know that she was having a good time and I did find humor in the fact that her having a good time could be a sign of a seizure brewing. I just love this girl. Autism, seizures and all. Life can be hard with her but when it's not...it's the most joyful experience. I can not even begin to chronicle all I've learned from life with her. She's one amazing little creation. I know, I'm a little biased.

Koolio and Hannah have bonded amazingly and that bond continues to grow. He's a "family" dog but he knows his job and he does it. He has brought a lot of joy to us all and a lot of peace. He sleeps with Hannah every night and she loves it. None of us can imagine life without hiim. He's just amazing.

Kyle is a senior this year and is busy with all the senior stuff. He's doing well and fully recovered from the swine flu. Zachary is a sophmore and he did band this year. They are going to Disneyland during Spring break so he's working towards that. David is still working at Harwood and is doing great. He isn't currently working at the church. He took a break when his mom got so bad and Hannah's seizures increased. Hopefully when we get Hannah settled down seizure wise he can get back to work there. All the guys are doing great and they are my rocks. I don't know what I'd do without them.

I'm doing well. It has been a rough year and a half and I have had some anxiety issues. Every time Hannah gets ill or has a seizure my anxiety level goes through the roof. Week before last when she was sick I had the worst panic attack I have ever had while driving to the store for some children's advil. I know it was just because I was worried about her getting the swine flu.(I know it's not that bad but it's proven deadly for kids with health issues) I pulled over and made myself think about the fact that God has taken care of her even in the midst of some really horrible circumstances and proven faithful and loving. She's in His hands and I have to believe that no matter what He'll give us what we need to get through it. He always has. It worked and I was good to go, and have been ever since.

I recently subbed at Hannah's school and LOVED it. I hope to get to do it more. It was especially nice to see her in an environment she loves so much. My girl LOVES school She's her momma's child there. I always loved school and still do. I also attended a seminar about teaching kids with intellectual disabilities how to read and it was interesting, informative and I enjoyed it thoroughly. Thanks to Arlington Special needs PTA for allowing me to attend their event even though we do not live there.

I finally went to the doctor yesterday. Hee Hee, y'all can get off my case now. You know who you are! I should know all those good/bad numbers next week. I had a thorough blood work up. Due to initial findings I was put on a prenatal vitamin. No, those findings were not that I'm pregnant. She feels like my body has never recovered from Hannah's brith and the prenatal was where she wanted me to start. She also told to do the Weight Watchers diet. My doctor feels like it's the best "life style" diet out there and that with my stress level I need a diet plan that will not add to that stress. Honestly, I'm not excited about doing WW. I have done it off and on since I was 17 and not with a lot of success. I lost 1.5 pounds in 3 months the last time. Plus, I dont' know anyone at the meetings so I feel out of place sitting there with all these people who have friends or coworkers at the meetings with them. I don't think the online version would be ideal for me but may do it if I feel the same way at the meetings this time. I'm not as socially inept as I once was though so who knows. LOL I promised I'd give it a try and I will.

I hope this is not too much information. Once I start typing it just all kind of pours out and I don't take into consideration if it's something people would want to know or should know until it's too late. I've been inspired recently by a young woman who has breast cancer. In her writings she talks about her ordeal as God's story to write and she's just the instrument. There is such freedom in those words. Ultimately God is the one in control and we're just an instument He uses to do His work. I'm attempting to adopt that thought process to my life. I have to quit bumping God out of the drivers seat. LOL! Thanks so much for your continued prayers and support. They really do mean the world to us.

Still Living and Learning,
Marcey

Tuesday, September 22, 2009

Fall in the air

Wow! Things have been crazy busy around here. I think we're all over the sickness that has plagued us the last few weeks. Hannah and I somehow have managed to keep the swine flu at bay. Just the guys have had it. We're not sure David and Zach had it but they had the same symptoms Kyle did so I'm pretty sure they did. Hannah did get an upper respiratory infection but got over it pretty well. She did have some seizures but not the status ones so we managed o.k.

I subbed last week at Hannah's school and have put in an ap to do it more. I also went to a seminar on Saturday about teaching kids with intellectual disabilities how to read. It was good but a little depressing. There just has to be an effective way to help these kids learn. There study showed it took 3 years of 45 minutes a day to get to a first grade level.

We have an appt with the metabolic geneticist on the 1st of Oct so we'll know more hopefully soon about how to help Hannah. The tegretol seems to be helping but it also has caused weight gain. We're not sure how much of it is that frumpy stage girls go through and how much is the tegretol. If she gains much more it looks like she'll probably have to come off of it and we'll try something else.

We're all enjoying this cooler weather. Koolio especially. I don't think he liked our hot summers much. Poor dog. He's still an amazing animal. I'm not sure when he'll start school. Right now he comes home with me everyday. He misses his girl like crazy though. We're also missing Billie a lot lately. This is the time of year when she and I would start discussing the holiday's, etc. I'm so sad that she won't be with us this year. David and I have been married for nearly 20 years and she spent every single one of those Christmas's with us except the first one we were in Michigan for. I miss her so much every single day.

Please continue to pray for us. I will try to be more consistent in updating the blog. Love and appreciate all of y'all!

Wednesday, September 16, 2009

Hannah has fever and seizures today

Hannah is running fever and having seizures.

Wednesday, September 9, 2009

Swine Flu

Well, it's made a visit to our house. Kyle has it. He is not really terribly ill or anything but he is sick. We've got him quarantined in his room. The nurse told me there are 50+ confirmed cases at the High School. I took him to the doctor this afternoon. Hannah's doctor called her in some tamiflu so hopefully she won't get it. Hopefully it'll hold her off until the vaccine gets here. It is dangerous for her to get it unfortunately. :<( Please help us pray for her safety.

Monday, August 24, 2009

First Day of "First" grade

Well, today was Hannah's first day of "first" grade. I haven't cried yet but I've come close. She had a small meltdown as we were leaving. I think more because of the routine change than anything. She was fine once we got in the van and got to the school. Koolio and I took her to her classroom where she seemed relunctant to go in but did. There was an alarm going off in their room and it was a little annoying. They were waiting on a mant. man. They were all driving busses. I'm hoping they got it fixed pretty quickly because those kids will not handle an alarm going off over and over for very long. One of the little boys was crying the but everyone else seemed o.k. I asked the teacher to email me in the middle of the day to let me know how she is. I hope she does.

We went to the epileptologist last week. He didn't change anything at this time. He did say that he'd like to admit Hannah to the EMU and take her off her seizure meds and "force" a seizure they can record. :<( I know the information would be invaluable to them but man, it makes me soooooooooo nervous. We're just praying that she won't have any period and we won't need to find out what is going on. Unfortuantely we're still having those strange complex partials but nothing more serious than that since June. PTL!

Attached is a picture I took last night of Hannah ad Koolio sleeping. This picture was taken around 1 a.m. LOL! He's depressed right now because he's staying at home right now to give Hannah's teacher a chance to establish a routine before we insert Koolio. Hopefully it'll just be a week or two.

Monday, August 17, 2009

Snow White

Today we thought the world was coming to an end. Hannah broke her Snow White heels in half and she was UPSET! I did everything to distract her but she kept digging them out of the trash and tried to wear them broke. I was afraid the jagged edges were going to cut her feet. I finally IM'd David and asked if there was any way he could drop by Toys R Us on the way home to pick up another pair. He agreed to do it. I'm sure the last thing he wanted to do was go to a toy store and shop for Snow White shoes but he's such a great dad. She always gets excited when he comes home but when he pulled those shoes out she was HAPPY! I think he enjoyed making her smile and being the one to get to make her day! So, the world did not end and we are now on our second pair of Snow White heels. I'm seriously worried about what we'll do when her foot gets too big. If you have any low heeled slides you are going to get rid of, please give them to us. I think I'm going to have to decorate some with Snow White soon because her poor feet are going to grow faster than her little mind does. :<( I've been so excited that she's been playing with "girly" things lately.

We have an epileptologist appt tomorrow and then take Hannah to meet her teacher tomorrow evening. It'll be a busy day. Hopefully we'll get some direction as far as seizures are concerned. I'm a little concerned about the weight Hannah has gained recently. Since July. I don't know if it's her meds or that frumpy stage most girls go through around 8 to 10 yrs of age. We have a metabolic geneticist appt. on Oct. 1st. This stuff is all so drawn out.

School starts a week from today. The kids are ready. I'm not. I've had a hard time the last week or so. Billie ALWAYS got so excited for the kids when they started school. She bought them an outfit every year of their lives for school. I really need to go to Penney's and get the guys some jeans but I've just not been able to go in the store. I drove by it the other day and got so sad. It's just really sad to think that Kyle will graduate this year and she won't be there to see him.

Thanks for your continued prayers and support!

Thursday, August 13, 2009

Budget saving mom

Check out budgetsavingmom for giveaways and couponing advice. Awesome site!

Wow! They just do not let me down!

This morning I met with Hannah's new teacher (Ms. Organ), Mrs. Duncan(principal), the new AP, and special ed director(Kathy Groppel). Hannah's new teacher is great. I can't wait for Hannah to get to know her. I'm always a nervous wreck but let me tell you....these guys have NEVER let me down! I always leave a meeting with them feeling confident that Hannah will be in good hands. I'm so excited! My Hannah gets to do the things she loves the most in a few days....school! I'll post more soon. We have several doctor appt.'s in the next few days.

Thursday, August 6, 2009

Where to start...

I'm not even sure what I've reported. We had a bad seizure day on Tuesday. Those strange complex partials again. The epileptologist increased her tegretol and said if they didn't stop by today he'd admit her for another video EEG. She did well yesterday so hopefully the increase in meds helps.

Hannah has gained quite a bit of weight. She's not eating a lot. I think it's either her meds or she's just going through that frumpy stage. We'll have to keep an eye on it though.

We see the epileptologist on the 18th so I'll have news then hopefully. Still testing and trying to find answers and help.

Hannah's active and into everything. I am constantly on the hunt for my shoes. You'll see in the following pictures why. Hannah LOVES shoes. Especially mine. I think it's adorable that she wears my flipflops side ways.

Thanks for your continued support and prayers. Please keep them coming.



Monday, July 27, 2009

These days...

These days we are spending our time waiting and playing. Waiting for doctor appointments, evaluation appointments, and any number of appointments. We are playing alot and enjoying every minute of it. Hannah is quite the entertainer. She wakes up in the morning talking with Koolio. We get dressed and I take her and him out for as long as they can tolerate it. We come in, eat breakfast and play school. She watches videos off and on and immitates the characters. Hannah likes to be held alot. She comes to wherever I'm at and says, "hold you". Translated that is "will you hold me?" I'll sit and bear hug her for a few minutes and we do that all through the day. She has decided my dishes in the sink need bubble baths. Water is splashed from can to can't but she's having so much fun it's hard for me to stop her. Yeah, my boys give me the same look you are probably giving as you read that. LOL! My shoes are always disappearing. Hannah LOVES shoes. She puts my flipflops on and wears them sideways. It's the cutest thing. She immitates all of us. We have to be so careful what we say or do because she does not forget and she will immitate whatever she sees and hears. Needless to say our days are very full and we are trying to enjoy all the good moments we have in betweeen the bad.

School is right around the corner. I'm exciting for Hannah yet nervous. She will be at the same school she was last year and the administrative staff and teachers there are amazing. They take really good care of Hannah. She will have a new teacher and with budget cuts there will be one less aide but I am confident that the administration will make any changes and additions should they be needed. They are just that great at making things work. I hope to get to meet with the new teacher soon. Hannah's rescue med has changed and she will now have to take one of her meds in the middle of the school day. She is having complex partials that are very unnerving and I just want to educate everyone so they can be prepared for the "worst" should it happen. At any rate Hannah is so ready for school to start back up. She's that much like her momma I guess. The kid LOVES school.

We are no closer really to having any answers about what is going on with Hannah and why she is having such severe seizures. I guess we are a little closer in that we've had genetic tests done and both came back normal so we're pretty sure it's not something genetic. Actually in reality her seizures are likely from her prematurity and all the things they had to use to keep her alive. We're having metabolic testing done on Oct. 1st and see the epileptologist again August 18th. As always I'm praying we do not experience anymore status seizures. I hate to say that I can handle the other seizures because I'd love not to have to handle any, but I can handle seizures, just not status seizures that can ultimately take our girls life.

I recently had Hannah put on the CLASS medicaid waiver list. It is a waiver that helps families like ours. However, that list is 8 to 12 years long. Can you imagine? Hannah could be 20 before she ever got the waiver and for sure 16 at the earliest. David says...."God is able"! I'm so thankful for his unwavering faith. Mine wavers so. Something I'm working on in my time with God. In addition to the medicaid waiver we have an evaluation with MHMR soon. I'm not sure what services they can offer Hannah but was told respite care is one and that I get to hire the respite worker. It'll be interesting to get the details. It's not alot of tiem but anything is better than what we have now. And I do feel bad about thinking about respite care but there are times when I need it severely.

I'll have to close here as I need to take Koolio to the vet. Thanks and please keep praying.

Friday, July 24, 2009

Teeth

I just had to give Hannah a klonopin. She's been really cranky for days and I have had a hard time pinpointing the problem. Well, today I got a look in her mouth and she is cutting four teeth. Hannah has always had seizures when she cuts teeth. Please keep her in your prayers and hope with us that she doesn't go into status.

Wednesday, July 22, 2009

NO PCDH-19 mutation/deletion & dishwasher

NO PCDH-19 mutation/deletion found. We got the test results today. In a nutshell....we still do not know why Hannah's having the seizures she's having. Epileptologist has ordered a full metabolic work up and the geneticist scheduled it for Oct. 1st.

I videoed Hannah washing dishes but can't seem to get it to work on here. So here's a picture of her. She said she was giving them a bubble bath.

Saturday, July 18, 2009

Toys R Us

Kyle's girlfriend was down this week for a visit. On Wednesday before I took her home I dropped them by the mall in Arlington to spend the day. They were celebrating their "one year anniversary". Anyway, I remembered that when the boys were little and we went to the city the highlight of the trip was a trip to Toys R Us. I decided I'd do that with Hannah. We walked in the store and she said, "wow!" I walked her through every inch of the store to see her reaction to things. She did not get excited about a single thing she saw until we reached the dress up section where all the play jewelry is. O.K. so Hannah has tons of beaded jewelry already. She LOVES the stuff. I tried to interest her in other things but I didn't even get a smile. I gave in and we we chose two more sets of plastic beaded necklaces and bracelets. We also added a pair of snow white shoes, a magnadoodle, and a barbie for the bathtub. She has worn the shoes around the house all day long today. Her feet are gonna be sore tomorrow. She's also enjoyed the magnadoodle and we used the barbie in the bathtub tonight. All in all I guess our toys r us trip was successful.

Koolio didn't feel well one day this week. He keeps rubbing his rear in ant piles. Ugggh! We just can't seem to get rid of them! Luckily I have cream and spray on hand to treat any bites he may get. He's been doing really well and he and Hannah are bonding more and more everyday. She LOVES him. I love listening to her on the baby monitor talk to him after I put her and him to bed at night. She tells him he's a good boy and that he's sweet among tons of other random things. LOL! It's just so great to have him and I can't imagine life without him.

We're still awaiting information. I called the geneticist Thursday to see if the genetic test from Harvard was back yet but she was on vacation.

Thanks for all your prayers and support. I have to get off her and finish my cleaning!

Friday, July 17, 2009

One year ago today....

On this day one year ago we got on the roller coaster of a lifetime. Hannah's had seizures since she was 7 mths old and I had always been assured seizures were not life threatening; a person doesn't die from seizuers. I found out otherwise. Hannah had a 2 1/2 hour status epileptus seizure and we nearly lost her. After two hours in the Hillsboro hospital being stabilized, she was careflighted to Cook's in Fort Worth. She went straight to PICU and we were warned that she may not be able to talk or walk when she awoke and could need therapy to learn again. I cannot describe the fear that had gripped me. All I knew to do was pray and ask others to pray.

We weren't sure when Hannah would regain conscienceness and alot was riding on what happened when she did. Around 4 a.m. the first night we were there she awoke and began fighting the intubation. They decided to remove the tubes. I coulnd't watch it. David stayed. His strength never ceases to amaze me. As soon as the tubes were removed she opened her mouth and asked for her momma and her PJ's. No sweeter words were ever spoken I can assure you.

We spent a couple of days in PICU before moving to the epilepsy floor. From start to finish we were there 7 days. I watched as God amazed us continously through the ordeal. Everytime a concern came up I'd ask for prayer and everytime sometimes within hours our prayers were answered. The biggest one I remember was that Hannah couldn't walk right. She was walking but it was not good at all. The physical therapist came in and did an evaluation and ordered inpatient physical therapy. At that point I was afraid we'd never get out of the hospital. I asked for prayer and the next day another therapist came to do Hannah's therapy and Hannah just hopped up and walked normally. The therapist grabbed her chart and looked at it and said, "checking to see if I have the right little girl". She dismissed us that day and the doctors came in and let us go home.

As bad as all this was, it was amazing too. It was the starting point of a journey that is tremendously hard and laiden with fear at every step, but it has taught me so much about this life and the preciousness of it. I sat here this morning holding Hannah and thanking God that I can still hold her. This journey is not near over. We've had 5 more of those same ordeals played out in the past year not counting all the smaller episodes. At this point I feel like with everything I have learned about epilepsy I know nothing. The doctors are baffled. We're all trying to find out what is going on and want to fix it. Hannah's needs are great. I get down and my faith waivers. I cling to the scripture that says...." And we know that all things work together for good to them that love God, to them who are the called according to [his] purpose." Today I thank God that this is not the end of the journey and that the story hasn't had it's last chapter written. I thank Him for the hundreds of people who have come to care for Hannah and our family and who pray for us even when we can't pray for ourselves. Thank you. You mean the world to us and I hope you know it. We wouldn't have made it through this past year without you. Thanks from the bottom of my heart.

Marcey

Thursday, July 16, 2009

Another day...

Other than a little tiredness, constipation,(side effects of meds that hopefully will subside) and screaming/screeching(still don't know what that's about. Afraid to even type what I'm thinking it may be.) Hannah seems to be doing well. We had that one day of complex partials last week and the epi raised one of her meds and so far so good. Since being off the keppra there is no more hours and hours of crying. We have our happy girl back. I'm so thankful. I was afraid we had lost her forever. We're still awaiting results from tests. Hannah sees the epi on the 18th of August and I'm praying everything is in for him to review by then. Especially the genetic test they did.

It's not looking like we'll be moving before school starts. I had hoped we would be able to but it's not in the cards it seems. About the time I think it's a possibility something sets it back. I'm trying to leave it in God's hands. Much better there than in mine. It's not like we hate Hillsboro or anything so staying won't be the end of the world. Hillsboro has cut back an aid in Hannah's class and the new teacher is a first year(altough I heard first year teacher are the best). The aid that handled Koolio was not brought back for this year so I'm not sure how it's all going to work out. I'm sure the new teacher will be fine. I just worry about the aids being less knowing the behavior issues that abound. Hannah's on a different rescue med as well as she'll have to take one of her meds at school in the middle of the day. Plus, we'd have to decide who will handle Koolio and train them because out of the two returning aids, one is scared of dogs, and the other would do fine on occassion but not as a constant handler. I'm not sure how the new teacher feels about dogs. At this point Koolio not being with Hannah is not an option so we'll have to figure it all out. I've never been let down by the staff in charge of making it all work though so I am trying to relax and just take a wait and see approach. My number one priority is that Hannah be safe and be able to learn.

I took her to the doctor the other day and it was such an ordeal. The doctor was fine but she ordered blood work and the lab was hideous. Hannah was a trooper. The lab tech was shaking so bad it was a miracle she could hold the needle. She even said at one point...."I've never seen an autisitic girl before". She didn't get any blood and I refused to let her try again. When we reported back to the doctor that they were unable to get any blood the doctor sent us back for a finger stick so we could get the needed results and called the lab and told them not to let that lady do the stick. Thankfully, Hannah took it all in stride. I really worry about the ability of Hillsboro hospital staff/EMT's to care for Hannah in an emergency. They work their tails off to stabilize her and I have no doubt they'd do everything in their power to help but they just aren't equipped. I can't help but wish we were just a short drive to the hospital that can help her best. I mean they have to stabilize her and then send her an hour away. What happens if they can't stabilize her enough to get her to the hospital? At least if we were closer an ambulance could run her to the hospital that can stabilize her. Again, God knows what he's doing and I have to let him work. And trust his work.

My faith waivers so often. I'm so hungry for inner peace. I want to feel the same assurance that a friend has who just found out her 35 yr old daughter has cancer. I read in awe as she talked about seeing God work in every detail and then proclaim that faith is indeed an adventure. How does one get to that point? Does it come with life experiences or is there something fundamental that I just keep missing?

Enough of my ramblings today. Please keep us in your prayers and thank you for all the encouragement and support.

Budget saving mom

Check out the new website! I love this site and all the great ideas. I hated couponing before but find it much easier following this site and the advice. Give it a look! www.budgetsavingmom.com

Friday, July 10, 2009

No more activity since Tuesday.....

Hannah went to doctor yesterday and had some blood work done requested by epi. It all came back normal so there doesn't seem to be an underlying reason for the activity we experienced on Tuesday. We're thankful that it didn't get worse than it was and didnt' require a careflight and overnight stay. The epi did increase one of her meds at night and left everything else the same. She's been fine the last three days.

Wednesday, July 8, 2009

Forget minimal bids

I'm dropping minimal bidding. If you're interested in something bid whatever. EXcept Sonata stems. I will keep those if I can't get the minimal bid.

Hannah had a decent night. Seems that because her new med causes dry mouth she has been drinking more and wetting more so her electolytes are low. It's always something. I'm just so thankful to God that these episodes did not involve careflights and hospital stays.

Tuesday, July 7, 2009

Having a Seizure Day

Please keep Hannah in your prayers. She's having a seizure day. So far we've kept them from being severe with klonopin but we're all on edge and scared. :<(

Tuesday, June 30, 2009

Appt. Set

Got a call from epileptologist this afternoon and he set an appt. for August 18th at 4:30. He said he should have all the test results including the genetic tests. Could be that he orders more tests or we may find that there is nothing more we can do but what we're doing. August the 18th feels like forever right now but I'm trying to be thankful for it because it took 7 mths to get in to see him originally.

We've had some pleasant days around here and I'm so thankful for them. Hannah's had some bathroom issues but we bought some fiber to add to her juice in the mornings so hopefully it'll help. She's gaining weight but she usually does during the summer because she can't get out in the heat. We took her out this afternoon though for about 30 minutes. It cooled down some so I thought we'd better get on out while we could. She turned 8 though and will probably go through that frumpy stage. She weighed 70 pounds and the doctors don't seem concerned so I guess that is o.k.

Anyway, she's doing o.k. and we're praying that she continues to do o.k. She seems really happy lately. Except when we took Koolio to be groomed this morning she was not happy. She cried all the way there. she sure was happy when we picked him up though.

Please keep praying. I'm working on the sale. I'll post it as soon as I can and I will make sure everyone knows it's happening.

Sunday, June 28, 2009

Our Howling Dog

Awwwww, we finally have our happy lover of life little girl back. It's so wonderful. She still has her moments but none of the constant crying. Keppra just made her an emotional mess. Eight months we road that roller coaster. Thank you God we are off. I'm so thrilled to have my happy girl back. She's still doing the screaming/screeching thing but it's not constant and I'm learning to adjust to it somewhat. I'll take it over the crying any day.

We have had a very nice weekend. I took a break yesterday. Don't look so shocked! Believe me it wasn't an easy thing for me to do. I am glad I did it however. I drove to Abilene and attended a "Loss Lab". Pretty thought provoking stuff. Then drove to Hurst and had dinner with a friend before heading home. David held down the fort and did an amazing job. He's the best husband and daddy in the world. Today was a good day too. We've had alot of fun with Koolio. We've discovered that Koolio howls when David plays the trumpet. It is one of the funniest, coolest thing I've ever seen and Koolio doesn't want David to put his trumpet up. He goes over and lays on the case so we can't open it. We just love this dog! We all made it to church together this morning too. It was nice.

Hannah's doing o.k. We just take it day by day and pray. We are still awaiting test results. She is taking 5 1/2 pills in the morning and 10 1/2 pills at night and one pill in the middle of the day. That's alot of medication. :<( But at least we've got to stop keppra and those 17 pills are only 3 seizure meds, an allergy med, and two vitamins. Just please keep praying for her. It would be nice to get some answers but if we can keep the status seizures from happening I'd be happy.

I'll send out an email announcing the Mikasa sale. I'm going to work on it early this week and hopefully have it ready by middle of week. The proceeds will go to help us with Hannah's medical expenses and a needed move. We've already hit $7200 that we owe this year for her medical and the year is only half through. :<( Not sharing that for sympathy, just talking about where we are and why I'm doing the sale.

Thanks for all your prayers and support. I know I say that all the time but we really are grateful. We couldn't make it without it.