Sunday, December 28, 2008

Photos Christmas

This is the note the boys left Santa.

This is David's mom....Billie....nanna to the kdis

Zachary...He does not let you take pictures. UGGH!

Hannah Christmas morning playing with her bead maze

Hannah playing with her bead maze

Christmas Eve after having some cake. Hannah put this hat on and went through the house entertaining us all saying, "ho, ho, ho!" It was exciting to watch her enjoy the holiday.

Friday, December 26, 2008

Merry Christmas....

I'll upload some photos soon. We had an interesting Christmas. David came down with the flu Tuesday night. He was in bed most of Christmas eve except when he went out to buy me some presents. The poor man was miserable. I'm really glad Hannah and I got flu shots! For the first time since we've had kids I took care of all the Christmas fixings when everyone went to bed all by myself. I really missed the fun we usually have doing this together. It was hard not to get bummed. The only thing that kept me from being bummed, I think, was that the boys had left a note for "santa" with milk and some reeses peanut butter cups. The note said, "Merry Christmas Santa. P.S. Sorry we didn't have cookies." Just knowing they were having a good time took some of the "bum" from me.

We had some really exciting moments Christmas eve. As most of you know Hannah doesn't "get" Christmas. She loves to sing Jingle Bells and Happy Birthday Jesus, but we still don't know how much she understands. Well, we dug santa hats out of a box and she wanted to put one on. I put it on her and she went through the house saying, "ho, ho, ho!" It was quite entertaining and uplifting to say the least. David had won this globe santa that changes colors and when I showed it to Hannah she started singing...."you better watch out, santa claus is coming to town." So, she's understanding more and more. She also told Jesus happy Birthday yesterday!!!!!!! :<)

I hope y'all had a great Christmas!

Wednesday, December 24, 2008

Christmas from Aarons!!!!

The manager at Aarons gave Hannah this dog for Christmas. He said she needed a dog to practice with. It's as tall as I am. She loves it! She was petting him and kissing him. Of course she calls it "Sandy". For some reason all dogs are "Sandy" right now.








Autism Night Before Christmas....By Cindy Waeltermann

This came in one of my emails today. Alot of parents of kids with autism are faced with merciless criticism. I'm so thankful that my family and friends are all supportive and try to understand. I dont' know what I'd do if you didn't. I hope you enjoy this woman's atempt at trying to help others understand.

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right colorAnd style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent..."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions. ..

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned...... .

Monday, December 22, 2008

We Got Dates!

We finally know when Hannah will meet her service dog! We'll travel to Ohio, meet the dog on the 10th, train with it from the 10th through 19th, test, graduate and bring it home on the 20th! Do I ever have alot to do between now and then!

Sunday, December 21, 2008

Pictures

I thought these pictures captured Hannah's spirit. She's been sick since Thursday. I mean VERY sick. Today is the first day she's been able to even eat anything at all. Also, Kyle had a Christmas banquet and I thought I'd post some of his tux pictures. You'll notice in the last picture of Kyle you'll see a little hand that has ahold of an ornament on the tree. She keeps snatching them. Our tree will be bare before Thursday gets here! LOL!













Saturday, December 20, 2008

Still Sick...

Hannah is still very sick. She woke up at 3 a.m. running a really high fever. She's awake now but pretty miserable. We're all on edge and praying hard that we don't spend Christmas in the hospital. Thank you for praying with us.

The house thing fell through. There were alot of problems that weren't discovered until the end of the deal and it just wasn't worth the risk. So, we're at square one. :<( We're looking for something to rent that is bigger, but I will be working hard to make this one bigger too. Getting rid of stuff, etc. If anyone hears of a large three bedroom or bigger house for rent please let us know. Buying is not an option for us at this time. We have had too many medical expenses to keep closing costs in our accounts and that won't change anytime soon with having to travel to Ohio and Chicago in our near future.

Instead of a fullsize bed we are looking to get Hannah a bed with a trundle so if anyone has one they want to get rid of please let us know.

I heard from the lab that is doing Hannahs' DRAVET testing and they have run into some snags with Hannah's sample. I should have had the results by now. So, there is a very real possibility we'll have to start from scratch on that one too.

I'm bummed but not defeated with all this stuff. Hannah's still thriving despite everything and that is something I continue to be thankful for no matter what!

I'll keep you updated on Hananh's health situation. We appreciate your prayers.

Thursday, December 18, 2008

Christmas and Hannah's sick....

Hannah is sick. She has a virus and a sinus infection. She's been running fever and throwing up all day long. We saw the doctor this morning. Her blood counts were out the roof. Please keep her in your payers. She's just really miserable and I'm a nervous wreck worrying and waiting for the seizure monster to strike.

Hannah missed her Christmas party at school today. Out of the three years she's been in school she's missed two of her Christmas parties. It really has me bummed. Not that a party is all that important, it's just the whole being sick during Christmas thing.

Honestly, I've been fighting the Christmas blahs. I know the reason for the season but still, it's hard this year. I don't know why. I mean, we've certainly had plenty to be thankful for and to celebrate. I guess I just have had so much sickness surrounding me that it's taking it's toll. There are still so many unknowns and it is taking forever to get answers. It's depressing and hard.

I hope I'm not dragging anyone down. Ugggh! Please pray for Hannah. She's so sick.

Monday, December 15, 2008

Photo's Promised....

Hannah likes Chocolate Chip Cookies
Getting some love from Daddy and Bubba!


Daddy's little Princess!

Always finding the fun in everything.

Cheese!

Nervous

I should get the results of Hannah's genetic testing this week. It's also the last week before the holiday break. Man, do I not look forward to the holiday's! Hannah is so hard to deal with when things are out of routine. I packed some photos from the hall today and it really bothered her. (((sigh)))

We're right at less than 3 months until we go get Hannah's dog. Please keep this effort in your prayers. Thankfully we have some travel money due to the garage sale and offering Central Baptist did for us, but we still need funds. The hotel costs alone are nearly $2,000. We'll have to rent a vehicle because my van won't make the trip and David's car is too small. We still have to get Hannah a full size bed so her dog can sleep with her, as well as purchase dog supplies. I've been amazed at how God has provided to this point, and I have to have faith that he'll finish the work. That's what my friend, Vicki tells me everyday. She got her travel money, dog supplies, and even some help with food for the road donated a few days before they left. LOL! The whole time she was telling me she wasn't worried. God would provide. Anyway, if anyone has any suggestions for fund raisers, I'd be glad to hear them. So far all mine have fallen flat. :<( Speaking of Vicki, she's Javan's grandma and he's the boy who got the dog I posted about. If you'd like to read more about the experience you can visit Javan's blog at http://www.4pawsforjavan.blogspot.com/ I can't wait to be in their shoes!

I'll post more about what I find out this week soon. Oh, and I promise those pictures will be on here sometimes tomorrow! I'm trying to learn how to post video so there may be some of that coming soon!

Wednesday, December 10, 2008

Bye Turkey

LOL! That's what Hannah said to Mrs. Mobley today after she buckled her in the car to go home. Mrs. Mobley told he bye and she said, "Bye Turkey". It was pretty funny! I don't know if Mrs. Mobley heard her or not but I'm sure she'll get a kick out of it when I tell her. She's always doing something lately.

The week of Thanksgiving was "streaking" week. Everytime we turned around she was stripped naked and running through the house. I'll let you imagine how that went over with her brothers! FINALLY, I got her to leave her clothes on. PTL!

Oh, and I've been telling her she needs to be nice and she's started telling me she doesn't have to be nice. I'll say, "Hannah, you need to be nice." She responds, "no, I dont' have to be nice!" Uggggh!

Those are just a few of the things I've experienced in the last few weeks. Don't you feel sorry for me?!?!?! NOT!

Saturday, December 6, 2008

The Holiday's....

I think the times that are hardest for a parent of a child with autism is at Christmas and their birthday. I remember my boys as young as two making plans for what they would ask for on their birthday and at Christmas. They'd spend hours looking at a catalog circling things. Christmas was always so fun for me because it is such a time of teaching. A time to help them understand that Christmas was about what God did for us and watching as they discovered the joy of giving. Every year we'd go through their toys and we'd bag up some to give to charities. We'd often go to the angel tree and pick out a child to buy a toy. They were always so excited about it all.

Hannah never asks for anything. She makes no plans about what she'll have in the coming days. I go through the catalog with her and she could really care less. They are fun pictures to look at but it doesn't register that she can ask for any of those things. She doesn't even know how to play with most of them. So, I go through her toys and I bag up all the stuff she got last year that she didn't even touch to make room for stuff she'll get this year that she probably won't even touch.

I always imagined what having a little girl would be like. It's nothing like I imagined at all. Hannah's precious but she is not girly. Shorts are her favorite clothing. I'll let you imagine how that goes over. She enjoys spongebob, scooby doo, and super why. She does enjoy some Strawberry Shortcake so we tried to make Strawberry shortcake a "thing", but it never was exclusive. She's just not into the girly stuff. Except bracelets. She loves bracelets. The beaded or chain type. She'll take them off people if they let her.

There's this kind of depression that sets in when you dwell on all the typical things she doesn't do, but this year I am not going to let it have any place in our celebrations. Today I had a little time and just went around the toy store and tried to look at things from Hannah's eyes. Not mine. It was amazing what I could find that she would actually enjoy. I think it's the first time I walked out of a toy store without feeling depressed in a long time. Even though I didn't buy a thing! LOL!

I was at an autism conference in Arlington Thursday through today and I got alot of information. It'll take me a while to sort it all out in my head. Overall it was encouraging. I gained alot of knowlege and some new tricks for my box. :<) It'll be fun to implement some of these new things in the house we're moving into soon. Mrs. Mobley (Hannah's teacher) is going to help me with some of it. Did I tell y'all I LOVE Hannah's teachers. She had great ones last year and she has great ones this year. I really feel blessed.

I guess I should get busy and finish the project I started while ago and quit. LOL! I just felt like sharing. If any of you other moms with children who have autism are reading this, I love ya! Go to that toy store and go in with the eyes of your child. You'll be amazed at what you'll find and how fun it will be. Our kiddos can enjoy Christmas too!

Friday, December 5, 2008

Autism Conference

I've had the privilege to attend the autism conference in Arling the past couple of days! My brain is on overload. It'll take me some time to process all the information. I'm excited though to learn about having so many new tricks to add to my bag! It's really quite amazing.

Hannah is doing somewhat better. No major meltdowns since Sunday. She had a slight one last night but it wasn't too bad. Her world has to be a frustrating place and I feel so bad for her but have to keep in mind that my feeling bad for her doesn't do her a bit of good. It's a tough thing.

I'm sending out Christmas updates soon.

Wednesday, December 3, 2008

Struggles, Frustration, and Good News

This has been a frustrating and disheartening week in many ways. Hannah continues to cry ALOT. I finally broke down and called the neuro on Monday after we endured a 3 hour bout of bawling Sunday morning. I was so disappointed in his response to my call. First of all he promised me in October that if we saw these kinds of side effects with Hannah that he'd take her off the keppra and put her on something else. Well, when I called he relayed through his nurse for me to just stop giving Hannah keppra and he didn't add a thing to replace it. O.K. So, I've been dealing with seizures for 7 years now and I KNOW you never just stop a seizure medication unless not doing so is life threatening. I am just really unsure what he was thinking. I told his nurse to tell him that I would not STOP the keppra because until he added keppra Hannah was having status seizures and we almost lost her THREE times. I told her to tell him that I'd just deal with the crying and see him in April! She said she'd call me back. I don't think she was expecting that. So, yesterday she calls me and says that she relayed my concerns and that Dr. Ryals says just keep her on Keppra and give her B6 in the morning and at night. So, I then remind her that I told her I was already giving her 50 mg's of B6 mornign and night, did he mean to give her more than that? She then tells me she doesn't know. That she misunderstood and that she'll call me back today. I have really lost confidence in their care of Hannah. I've been researching and have decided that we have got to take her to a specialist. Hannah is taking three seizure drugs. One of which she had seizures on the entire time she was taking it but this neuro didn't want to take her off. He's not convinced it wasn't helping. Plus, it is known to make DRAVET worse. I picked up one of her meds yesterday and it cost me $50 but my insurance got charged $1064.85 for a 30 days supply! For a drug I dont' even think helps. If we can get to this specialist she can put Hannah on the right medications and probably have Hannah only taking one drug which would save our insurance company and us thousands of dollars! The specialist unfortunately is in Chicago and I don't know if our insurance will pay for it. I sure think they should. I was told we coudl get a flight there with Angel flights for nothing and that we coudl stay in the Ronald McDonald house for $5 a night while there. I so hope I can make this happen for Hannah and us. I'm tired of all the games. I just want to go to someone who cand help us help Hannah. Enough of that ramble. Sorry.

On a good note, Hannah seems to be doing o.k. She's really starting to be more vocal and we are learning that she knows alot more than we ever thought she did. It's just hard for her to convey what she knows to us. I have some new pictures I'll post soon. She was taking a nebulizer treatment and smiling through the mask. It was cute.

Please keep Hannah in your prayers. She has gotten over the respiratory illness she had but still seems to have a lingering cold. She also is really struggling emotionally. My happy little girl is crying alot. It's so sad and hard to watch. Thank you all for your prayers and support. We could not do anything without you.

Update on Javan's training and dog

This is my dear friend Vicki's grandson and his new service dog Tobi Mesa. She says that Javan said Tobi is the dog he always dreamed about. Vicki testified that Javan slept in his bed all night for the first time with Tobi. It gives me chills! Javan has aspergers so Tobi is an autism assistance dog. I hope you enjoy these photos! I sure did!












Thursday, November 27, 2008

Happy Thanksgiving!!!!!

Wow! This has been a year and we still have another month to go! I woke up this morning feeling overwhelmingly grateful. We have so much to be thankful for!

A friend sent me this poem today and I wanted to share it with you. It so describes my heart for all of you. So many of you I've never met, but you have become dear friends nonetheless. Thank you for all your support and Prayers. I hate to imagine our lives without each of you!

A poem by Peggie Oefelein

You have seen us struggle, you have seen us shine,
You have joined my family and become a friend of mine.
You do not judge, you do not waiver
You held us up, you are a life saver.

Thanking God seems so simple and so not enough,
for the people who have made me so tough.
You have taught me to laugh when life is not good,
You have held my hand to do what I should.

I am a better person because of you,
I know that because all you do.
Thank you for being my friend,
I know you will be there until end.

Wednesday, November 26, 2008

Javan's Service Dog....

Javan is the grandson to a dear friend I met through 4paws. They live in Hurst Texas and he is in the December Training class. He will meet his dog on Tuesday, Dec. 2nd! We're so excited for Javan! This is the letter from his dog and her picture.


Hello! my name is Mesa and I am a Goldendoodle. I am a member of the national Parks gang born to Allie and Hobo. My birthday is 11-9-2007 and I am a girl dog. I hope you do not mind and I sure hope you are not one of those boys who runs around saying girls have kooties! I am so excited you are coming. I heard you visited us and were actually in the same building with me. WOW you know what I think I felt you here! I was just sitting there in my crate and bam you came into my head and I was thinking it was THE Tuesday and you were here to get me. Well,it is only one more week! Next Tuesday it will really be THE day and we will be together! xoxoxoxoxoxoxoxoxoxoxo Mesa



Monday, November 24, 2008

Dr Visit

After a weekend of illness I took Hannah to the doctor today. She has a bad cold, with sinusitis and bronchitis. She can barely talk. Dr. Beyer put her on an antibiotic and gave her a cough medicine.

I got a call from Scottish Rites today and they are referring Hannah to Children's Medical Center for a intense rehabilition program to treat her hypotonia. The program involves botox injections so I have something else to learn about. I'm not going to attempt getting her in until after the New Year. We just have too much happening right now.

Next week I will be attending the Autism conference in Arlington. I'm so excited to get to go. I've heard wonderful things about it and look forward to the information I should get from the experience.

Please keep praying for Hannah. I did complete her video and my friend Vicki hand delivered it to 4paws today! She is there with her grandson to get his service dog. I cant' wait to hear about their experience and meet their dog!

Got to get this girl to bed!

Saturday, November 22, 2008

Cold & Fever

Hannah has a bad cold and is now running fever. Please pray for her. Fever is the main trigger to her status seizures.

Sunday, November 16, 2008

This Girl is a Mess!!!!

It's one extreme or the other around here these days. Hannah just loves to aggravate lately. She's gotten really mischievous. Yesterday we spent all day making her put the cushions back on the couch that she had taken off a million times. Today she's been in Zachary's birthday cake several times. She's getting into everything. I think we're going through the terrible twos at age 7.

There have been few meltdowns the last few days which is really a relief. We're still on the same meds. I've added giving her a 100 mg's of vitamin 6 and it may be helping a bit. We'll have to wait and see I guess.

At any rate I'll take those aggravating, mischievous days over those days in the hospital anytime. In reality they can be really fun. Sometimes I just have to adjust my attitude at the moment. LOL!

Oh, and yesterday I was so excited! Hannah and I were playing around on the computer when she started pushing each key and telling me the name of the letter. She knows them all. I knew she did but sometimes it's hard to know for sure because she just lacks the ability to communicate what she knows. It was an encouraging development though and let me know that the work we're doing with her is getting through.

On Friday we went to the lab and had Hannah's lab drawn for the SCN1A mutation testing. Really we're sure she has it. It's complicated. Most neuros treat epilepsy as a whole and do not think in terms of syndromes when treating it. So, basically it's been up to me to get our neuro the information about this syndrome and how it needs to be treated. Thank God for The Idea League and Dr. Angela Black who are helping me with that. The geneticist we saw felt Hannah definitely had DRAVET and Hannah fits all the criteria for determining it. Even if the test comes back negative for the mutation it doesn't mean she doesn't have it. We'll have to go to a specialist which we have to do anyway and they will make the final determination. As weird as it sounds I hope the test shows us something. As awful as DRAVET is, it will be nice to know what we're dealing with and can focus on treating it particularly. So, I should have the results in 4 to 6 weeks.

I still have tons to do and a little over 3 months to get it done in. I've about put the finishing touches on the final video to send to 4paws. I've filled out the dog match form and sent it to them. I still have to buy a few dog supplies but think I will wait until we see which dog she gets. Also, I've got to finish raising our funds for travel. We're also going to make a move to a larger, better house before the end of the year.

It's hard to believe the holiday's are around the corner. I know the Chapman's will be extra thankful this year for God's blessings in our lives. We are so blessed and we know we are! We live with a constant reminder of how good God is. Every smile, giggle, run, skip, and song we are reminded of the miracle we have among us. God is Good!

Sunday, November 9, 2008

Insanity....

Please pray for mine. I'm going to call the neuro first thing in the morning. I want Hannah off lamictal and Keppra. I KNOW topomax works and she didn't cry all the time when she was on it. I want to at least see if it causes her to cognitive slow down. If it does, then I'll ask for something else. She can't live like this! I won't let her. We've had 5 days out of 7 of meltdowns where she just cries for hours and hours. I've tried giving her B6 to counter the side effects of keppra but it's just not working. Please pray for her. She keeps telling me she's sorry and I keep telling her it's o.k. but she just keeps crying. I think she knows she shouldn't be crying but just can't help it. I don't know. (((sigh))) We need your prayers!

Thursday, November 6, 2008

Hillsboro Elmentary is the Best!

I met with Mrs. Duncan, Mrs. Sellers, and Mrs. Mobley this morning and I left feeling really good about things. I was embarassed about my meltdown last week but they were so understanding and willing to work with me. This was a great start to my 38th birthday! I pray it ends on this good a note! LOL!

Saturday, November 1, 2008

Honestly....This week has been the worst one I've had in a while....

This was the worst week I've had in a very long time and I'm so glad it's over!

On Monday we saw the geneticist and she informed me that in her opinion Hannah does have DRAVET but that the genetic test we needed to help us see if she is more than clinical for it, would not be covered by our insurance. The test was $4400 out of pocket. She then felt Hannah had extreme hypotonia in her hands and ankles. I came home frustrated. Contacted my Idea League parent sponsor and an md on the board and she went to work to help me get what we needed. So, once again I'm advocating for my daughter and getting her what she needs. This stuff is alot of work. I also contacted Dr. Beyer (Hannah's pedi) and she is sending me paperwork to get Hannah evaluated at Scottish Rites. Then we got new neighbors and they asked if they could cut down a dead tree in our front yard. They said they wouldn't charge us, they just liked to cut down trees.

On Tuesday I take Hannah to school and we find out that one of custodians passed away the day before on the school campus. Bless his heart. He was a very nice man. I ran into Mrs. Divin and we had a chat about how I really like Mrs. Mobley(Hannah's teacher) and am so glad they moved her to this school. We talked about Kyle and his college, Zachary and how he's liking Highschool and of course Hannah and how she's a hero. I get home and the city is in front of my house telling me that they will not pick up the limbs the guy cut down because they are too big and that I'll have to cut them down more and it will still cost me $65 for them to pick it up. LOVELY! I have plenty of time to cut limbs and I just love throwing $65 more dollars to the city. Ugggh! So, I went to work trying to figure out what to do. Then a woman from DADS came to the house to do an assessment on Billie to see if we can get her some assistance with baths, etc.

Wednesday I had a gastro appointment that I canceled. The day wasn't too bad but then that evening I gave Hannah her bath and washed her hair. Her hair has been a mess y'all since July. I would just about get it all worked out and she'd go into the hospital again and have another 24 hour EEG and it would be a mess again. Well, three of those incidences had her hair in mats at the scalp. I've been steadily working on them and working on them. Wednesday night I just couldn't get them out. I worked them towards the ends with her screaming, "Please! Jesus! Please!" I was so upset. I had to cut them out so I cut about 6 inches off her hair. The comb went right through after that. That baby had been through enough torment and I wasn't going to torment her another minute over some hair! It just wasn't right. In between all that my neighbor kept ringing my doorbell to ask me if they could finish the job with the limbs and I just pay them instead of having to pay the city. That they needed the money bad. So, I agreed to just let them do it and get it over with.

Thursday was the worst day. I was in Wal-mart when I saw another parent. Not a parent that I speak with or even know. Just one I've seen. I nodded at her in passing when she stopped and asked me what I was going to do about the school district not letting Hannah's dog come to school with her. I told her I didnt' knwo that they weren't. Basically she went on telling me a bunch of stuff that really upset me. Things like people think I'm overprotective and that Hannah doesn't need the dog. Then I was in line at the school to pick up when I found out I had been breaking rules by posting pictures of Hannah that had other school children in them. Not a big deal because I didn't know. I just took those ones off. Then I got home and I had a letter basically threatening me with truancy over Hannah's absenses. I know they are only doing what they are required by law to do but it's just unnerving. There has to be some kind of exception to the rule. Ugggh! So, I emailed the assistant principal and asked if I could just trash the letters or does she need me to go through the whole process of sitting in her office explaining why Hannah was out so much even though they have a note on file. I then emailed Hannah's teacher and had a breakdown telling her how stupid I had been to brag on this school district, etc. I cried all afternoon and into the night. It became glaringly obvious that I had been the victim of ignorance. There had been no talk among administration and faulty that I was overprotective and that Hannah didn't need her dog after speaking with Hannah's teacher more. How can a parent kick another parent like that when they are down. Surely to God in heaven they aren't "jealous" of Hannah getting a service dog! I just don't think people get it. Hannah almost died three times in less than three months! I'm talking she was dying. If it weren't for life support, emergency seizure meds, and a miracle she wouldn't even be here for us to worry about whether I'm overprotective or she needs her dog. I guess unless you experience it yourself you can't even understand. I know that I'd never do that to another person though and it's hard for me to understand anyone else doing it. Even if I had heard such talk I'd have never told the person because I'd assume with all they'd been through they didn't need to hear that mess. Uggggh! I'm rambling. I feel like I'm back in Junior high with this crap!

On Friday I got a call from the lab that we had been working with about the testing needed and the rep went to work for me. By that afternoon she called me to inform me that she was able to get Hannah's testing at 100% covered. They are sending me the kit to go have the lab drawn and then I am to mail it to them. Not the lab. I also got a call from the assistant principal and will meet with her and Mrs. Duncan on next Thursday morning. She was kind when she made the date. I'm pretty embarassed for not keeping myself in check and having an emotional breakdown over the whole overprotective Hannah doesn't need that dog thing. It's just that the woman knew alot of specific information and she I was upset that there was concerns but no one had said anything to me about it. (((sigh))) I thought our luck may have changed. Everything seemed to be going alright when I was combing Hannah's hair and decided to french braid it. I got towards then end and found a big bald spot. I have no idea what it is from. From her meds? From all the meds at the hospital? From the EEG's? I just dont' know. It was pretty much a breaking point for me.

I'm scared. I won't lie. I'm actually very scared. I'm tired. I'm frustrated. I'm a number of things. This is hard stuff. The liklihood that Hannah could die in one of her seizure episodes has increased. It's a very real chance. When I drop her off at school in the morning the chance that she will be gone before I see her again is there. I know it's there for everyone, but it's really there for me. That being said I want her to enjoy her life to the fullest of her ability. I want to do everything I can to help her be safe, but I do not want to hinder her living this life and loving it to the fullest. Believe me when I say that's a hard task for this mom.

Please pray that next week is smoother than this week. I have a very busy one. Billie and I both have doctors appt's on Monday. Billie has one on Tuesday plus it's election day. Then Wednesday I have an appt. in Arlington. Then Thursday is my birthday (Whooooopeee! LOL!) The big 38. (blech) and I have a meeting with the principal and assistant principal. So far Friday is open, but I bet it won't be by the time it gets here. LOL!

I appreciate all your prayers. Please pray for my sanity. I have 4 months until we go get the dog and alot to accomplish in those four months. Plus, the holiday's, finding a house and trying to move, and just a bunch of stuff. My head hurts just thinking about. Thank you for all your support. We'd never make it without y'all!

Thursday, October 30, 2008

I'm blessed...

I have good days and bad days. It seems like everytime I have a bad one something happens to remind me how blessed I am. Grab a kleenex and take a look at this video.....99 balloons.... www.youtube.com/watch?v=th6Njr-qkq0


Geneticist & Stuff

It's been an interesting week to say the least. We saw the geneticist on Monday and she agreed that Hannah seems to have DRAVET syndrome. So, we then had a frustrated moment when she informed me our insurance would not cover the SCN1A test we needed. She also felt like Hannah had extreme hypotonia in both hands and quite a bit in her ankles. So, I left her office with a promise to help me in any way with my appeals to get the testing done. Luckily, the pediatrician that is my parent sponsor from the Idea League was a HUGE help to me in guiding me to talk to the right people. Yesterday I spoke with a representative at a different lab that can also do the testing and they are working to help get the insurance to pay for it. It just makes things easier when you know you have people in the ring on your side of the fight. So, we have the ball rolling in this area anyway.

Having DRAVET doesn't really change Hannah's treatment but it does help us know which drugs to stay away from, etc. The hardest part is the realization that she will never outgrow her seizures. Hannah is by far not the worst DRAVET child out there. Some of these kids have hundreds of seizures a day. The part that has us concerned is that some DRAVET kids have really long seizures called status. These seizures can cause death. Unfortunately these are what Hannah experiences. She doesn't have alot of seizures but when she does they are these life threatening ones. She will be one of only 500 known cases in the US. Incredbible. We have hope though because we know Hannah has responded to the right drug in the past and we beleive that she can do that again. We just have to keep praying and hoping. You can read more about DRAVET at http://www.idea-leauge.org/

I've been wrestling and wrestling with finding therapy resources for Hannah in our area. On Monday a friend sent me a link to a special needs ballerina program and when I checked it out I found camp hope therapy program which can give us everything we've been needing therapy wise for Hannah. I'm working to set up evaluations now. They have gymnastics, the horse riding therapy(can't remember the name), and dance programs too. It's just a really neat program all around for kids with special needs.

I typed up an FYI letter for Hannah's pediatrician just to kind of keep her in the loop about everything and asked some questions. They are referring Hannah to Scottish Rites for the low muscle tone. They'll evaluate her and if anything is needed they'll provide it. If nothing else, at least when another doctor comments about her muscle tone I can say she was evaluated by Scottish Rites already and there was nothing we could do, etc.

We're only 4 months from going to get Hannah's service dog. I'm putting the finishing touches on her video.(Thank you Rachael for loaning me your camera!) Some have asked, and yes we do still need help with travel expenses, and dog supplies. To get a tax deduction for your gift you can send the check to Central Baptist Church and make sure they know it is for Hannah Chapman. We'll be having other fund raisers soon but I haven't put them together yet. I'm so not begging guys. It's just easier to let everyone know in one place than answer the emails individually. I'm not lazy, just swamped. Forgive me please.

Central Baptist Church
PO Box 263
1100 Old Bynum Road
Hillsboro, TX 76645

Thanks for your continued prayers and support. We know we could not make it through any of this without it!

Tuesday, October 21, 2008

The next Few Months....DRAVET

Hi All. I thought I'd send out an update. Hannah's back at school fulltime as of yesterday. She sure was glad. Me, I enjoy seeing her enjoying life, but there is always that uneasiness in having her away from me. I'm not sure if it'll ever go away. Every morning when I leave her I hug her to death and give her a million kisses. I know her teachers have to think I'm nuts. LOL!

The reason for this update is to just let y'all know what is going to happen in the next few months. We are pursuing a DRAVET syndrome diagnosis. I've spent a few weeks pouring over the information, talking with other parent's of DRAVET children, a pediatrician in San Marcos who's daughter also has DRAVET(she is also on the Idea League board of directors), and the Idea League themselves. The Idea League is a universal organization for DRAVET. There are only 500 known cases of DRAVET in the US and Hannah is likely one of them. So, in the coming months we will work to either confirm or rule out this syndrome. It's a pretty tedious process so please pray for us. There are only two labs in the US that perform the testing and there is only a hand full of specialist that treat it. Most of them are located in Chicago. We do know however that the epileptologist Hannah is scheduled to see in April has diagnosed and is treating one other case. The Idea League is sending information to Hannah's neuro, the epileptologist, and her pediatrician. It may take us quite some time to get the official diagnosis but we are putting things in motion. We have to try to get the insurance on board with the testing because their contracted labs can't do it and the specialists would be out of network if we have to see them. Fun, huh? LOL!

I could go on an on about how we came to this conclusion. The clinical manifestation of DRAVET has been on spot where Hannah is concerned. The drugs that are bad for DRAVET have been bad for Hannah. The drugs that are good for DRAVET have been good for Hannah. The whole sodium mystery we had when she was on Trileptal totally makes sense now. The bad news for us is that Hannah having DRAVET means she will not "outgrow" her epilepsy. The good news is that it seems like from Hannah's history when she is on the right drugs she responds well to therapy. There are DRAVET kids who are taking drugs only approved in Europe and are still not responding well to treatment. So, our goal first is to get her on the drugs that work and then we'll go from there. We've got to get these status episodes under control. God has had his hand on that girl! She's had three status episdoes in less than 3 months and is no worse for wear. I know kids who have experienced one episode, not to the extent Hannah did, and they can't talk or walk. They've been recovering for years. Actually I haven't met a kid yet who has had a status that wasn't severely affected. We really have been extremely fortunate. THANK YOU GOD!!!!!

We are still on to go get Hannah's dog in March. We're trying to do some fund raising to finish up her travel expenses. I'm thinking about helping Hannah design some Christmas cards and selling them off her blog. Anyone have any experience with that? Also, if anyone has a microwave they aren't using we can sure use it. Mine is on the brink. My video camera broke too and I need to finish up Hannah's video to send to 4paws to help them make a definate match for Hannah. If anyone has one I can borrow for a week or two, it would be really appreciated. If I can avoid having to make these purchases I need to. 3 hospitalizations, medication copays, doctor visit copays, deductibles, and half a dozen ER visit copays in the last 3 months has taken it's toll. Unfortunately we're not done yet. There are more tests and doctors to come.

Oh, and on top of all Hannah's stuff I will be seeing a gasto on the 30th. My doctor thinks my gallbladder is messed up. I've been having severe upper stomach pain off and on since July. Usually in the middle of the night. So, I dont' know what a gallbladder being messed up entails but I guess I'll find out on the 30th. It can't be fun, I'm afraid. Ugggh!

Wow, one of these days I'll give y'all GREAT news! I promise! LOL! I hate that everything is not too fun stuff to read, but if I'm real, this is our life at the moment. Thanks so much everyone for your prayers and support. I know I ramble on and on.

God Bless and Keep Each of You!

Sunday, October 19, 2008

Welcome to Holland

WELCOME TO HOLLAND
byEmily Perl Kingsley.

I am often asked to describe the experience of raising a child with adisability - to try to help people who have not shared that uniqueexperience to understand it, to imagine how it would feel. It's likethis......When you're going to have a baby, it's like planning a fabulousvacation trip - to Italy. You buy a bunch of guide books and makeyour wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It'sall very exciting.

After months of eager anticipation, the day finally arrives. You packyour bags and off you go. Several hours later, the plane lands. Thestewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up forItaly! I'm supposed to be in Italy. All my life I've dreamed of goingto Italy."But there's been a change in the flight plan. They've landed inHolland and there you must stay.

The important thing is that they haven't taken you to a horrible,disgusting, filthy place, full of pestilence, famine and disease.It's just a different place.So you must go out and buy new guide books. And you must learn awhole new language. And you will meet a whole new group of people youwould never have met.It's just a different place. It's slower-paced than Italy, lessflashy than Italy. But after you've been there for a while and youcatch your breath, you look around.... and you begin to notice thatHolland has windmills....and Holland has tulips. Holland even hasRembrandts.

But everyone you know is busy coming and going from Italy... andthey're all bragging about what a wonderful time they had there. Andfor the rest of your life, you will say "Yes, that's where I wassupposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... becausethe loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Saturday, October 18, 2008

Ugggh!

Hannah woke up throwing up and having diarrhea. She's not running fever. Please pray seizures stay at bay even through whatever this is today.

Friday, October 17, 2008

Keppra

Hannah seems to be doing alright on the Keppra. No behavioral or emotional outbursts. She seems herself pretty much. Everyday she gets a little more back to herself. She didn't go back to school this week. I kept her with me to see how she did on the new med. I did take her for 2 hours yesterday and the school let me stay with her. She really enjoys school. She went for 3 hours today and I stayed with her again. If we get through the weekend without any issues she'll return on Monday as usual. She sees her neuro on the 23rd and the geneticist on the 27th. Please continue to pray for her. She's a trooper but her little body needs some time to heal. Her skin is a mess from all the tape that has been pulled off her. I've got to where I just let it wear off because I feel so bad rubbing at it. We've tried everything to get it off and it comes off some, but not all the way. Anyway, she just really needs a break.

I am going to see a gasto on the 30th. It looks like I may have gallbladder issues. I've been experiencing horrible pain since June. I had my yearly the other day and everything checked out o.k. and my MD feels like my symptoms are gallbladder related. So, I'm staying away from fatty foods and hoping I can put off any kind of surg. until I get Hannah straighted out. I know it's not a big deal, but I've just got alot on my plate right now. I'm kind of dog piled.

Didn't mean to make this post about me. I got a letter today from 4paws asking more questions about our family and Hannah's interaction with dogs. Well, Hannah hasn't been around dogs so I will have to find one that we can use for a few hours that is kind of calm and kid friendly. If any of you have one like that and wouldn't mind letting us come by or bringin it over, I'd appreciate it. We need to video her with the dog too. Any size dog will be fine.

I apologize for my brain dead posting lately. I haven't even tried to make it "correct".

Thanks for all you do!

Tuesday, October 14, 2008

Daddy and His Princess


Going Home Again

We are going to try going home today. Hannah's eeg hasn't changed. She didn't have any more seizures. They gave her Keppra via IV and got it at a therapeutic level and they also have dilantin at a therapeutic level. we'll go home taking 250 mls' twice a day. We will remain on lamictal until the 23rd when we see the neuro. If she does well on Keppra then we will wean lamictal. The epi agrees with this approach. Sadly this is how it is. There is no cure for epilepsy so it's a guessing game when treating it. You start out on a med and a dosage and you just keep trying until hopefully you get to one that will control it. Sometimes, you will get control on a med for years and then all of sudden it'll quit working. It's so frustrating. So, hopefully keppra will work and we won't have any of the negative side effects that I fear. I'd love hannah to never have another seizure but at this point my goal is to get the status episodes under control. Seizures we can regretfully live with but status seizures we cannot. Please keep us in your prayers. We're exhausted. The only thing that keeps us going is prayers and the spirit of this little girl who fights this battle. I'm telling you, she is a HERO. She beats Tony Romo or any super star any day! They can't even compete with Hannah. LOL! She's incredible y'all. They came in to draw blood this morning and she was playing with the tech. Giggling and smiling and the woman had a needle in her hand! LOL! No, she's not crazy, she's just our happy go lucky lover of life princess! How can I let this get me down?

Monday, October 13, 2008

Adorable Gift Basket






Hannah got this adorable gift basket from another 4paws family. It has tons of fun stuff in it. Including Strawberry Shortcake, My little pony, and princess' stuff. Thank you Karin & Family. You made our princess smile today! Can't wait to meet y'all in March!




We're back in Cook's....Here are my two updates....

Well, we're back in Cook's. This time in the epilepsy monitoring unit. Thankfully we got medical intervention quick enough that Hannah did not go into respiratory distress so she did not have to be intubated. She's on regular oxygen. Right now they are about to start another dilantin drip. She's resting.

What a night! What a weekend! On Friday Hannah was her happy go lucky self. No illness at all. She had a blast Friday. Friday night out of the blue she has a seizure that lasts over 5 minutes and we end up in ER. I've already whined about that experience so I won't do it again. Saturday she did fine. Nothing out of the ordinary. Sunday she coughed all day but never ran a fever. About 10:30 she had a seizure that lasted 4 1/2 minutes. She came out of it but didn't start breathing again right away. David called 911 and she started breathing. Then she went into the second seizure right after that and it lasted nearly 6 minutes so I gave her diastat and we made a trip to Hillsboro ER in an ambulance. While at the ER Hannah did not seize anymore and all her bloodwork and x-ray's came back alright. They sent us home. We were home 30 minutes when she went into another seizure and it lasted over 6 minutes. We went back to the ER and they started a dilantin drip and sent us to Cook's in an ambulance.

We got to Cook's around 4 a.m. and was in ER until 9:30 a.m. We are in P410 in Epilepsy monitoring unit. Don't have alot of information right now. They are trying to make sure she doesn't have a status. We may get to see the epi that we weren't scheduled to see until April while we are in here. Also, it looks like they are finally going to put her on topomax again.

I'll post again when we have more information. Please pray for Hannah and for David and I. We're so tired. We were up the entire night and didn't get much sleep. Also, pray for the boys. They are both being so brave but I know they are worried. Thanks.

Next....

The neuro just came in and we had a long chat. He does not want us back on Topomax. He thinks we need to try other med combinations before we resort to going back on topomax. He's reasoning is that Hannah's biggest problem outside of seizures is development and when we took her off topomax her world opened up. I agree, but a part of me wants to go back to what works no matter the cost. I so wish I could know what Hannah would prefer. (((sigh))) Right now, the plan is to put her on Keppra. I'm very nervous about it because everyone I know that has a kid on it has told me horror stories about it. Saying it made thier kid psychotic, etc. He promised me that if we saw that it was going to affect Hannah that way we'd go off of it and he'd put her back on topomax. He says that he sees more people do well on keppra than don't. Anyway, they're about to hook her up to continual EEg and video EEg. When we get the results form all that we'll make a decision. Please pray we make the right one. I'll update when I can. She's still resting well.

Saturday, October 11, 2008

Frustrated

Hi all. Just an update. We were in ER with Hannah again last night. David and I were in the livingroom hanging with Zach when I heard a strange noise on the baby monitor and sure enough Hannah was having a seizure. I had to give diastat to stop it and then we made a trip to ER because Cook's neuro's told us not to mess around. If she was having a seizure that I had to use diastat to stop, having clusters, or going into status to take her to the nearest ER. Two status seizures in less than 3 months is serious, and they feel like the ER can hopefully stop the seizures and keep status at bay if we get there in time. Thankfully the diastat seemed to work this time and she didn't have more seizures when we got her there. They gave her a dose of klonipin and sent us home. Because she hadn't been sick, wasn't running any fever and the only thing that had happened that day was she got a flu shot they didn't poke and prod her. For that we were thankful. She still has bruises and cuts all over her arms from her Cook's ordeal.

We got to ER and David took Hannah back while I filled out all the neccessary paperwork for the 100th time. In the mean time the triage nurse comes out all in a huff and says, "Chapman, where is Chapman?" Then she looks at me all hateful and says, "HANNAH, where is she?" I told her she'd already been taken back. She then sighed real heavy and said, "how much does she weigh? Do you know?" I told her and she turned with her little attitude. Then as she was walking away I said, "Good God! What is your problem?" She met me in a few minutes outside the door and patted my shoulder and said, "I'm sorry" I go in with Hannah and she is sleeping off the diastat pretty soundly. The ER doctor comes in about an hour later and starts asking questions. Then he tells me there is not really anything he can do. Can you give me a number so I can call the neuro he said. I gave them the number. I explained why we were there. He explained that he didn't mean to sound heartless but really if she wasn't seizing when we come in there is nothing they can do. DUH! I brought her there to have her vitals checked because I gave her diastat and the seizure lasted too long that she had. I can't predict whether she's going to go stauts or not! I was doing what the neuro's told me to do. Do they think I enjoy giving them $200 everytime I come there? UGGGGGH! So, he called the neuro. They asked about her vitals and then told them to give her klonipin and for me to continue giving it to her through the weekend. We did all that last time and she still went status a few hours after I did it. Thankfully this time it all seems to have worked and she didn't have anymore last night.

I'm soooooooooo frustrated with this situation. Basically they are saying we are doing all we can be doing. However, I can't accept that. We had complete seizure control for 2 1/2 years on topomax. At this point I'm ready to put her back on it to see if it'll work again. The only reason we took her off of it was becasue she had gone seizure free for 2 years and we chose it to get rid of because we thought she was having cognitive side effects. And her world did open up when she came off of it. It's a catch 22 I'm afraid. We either have seizures, life threatening seizures or we have a zombie. It pretty much stinks. Many people that have kids with Dravet syndrome think Hannah has it. When I mention it to the neuro's and doctors they look at me like I'm from Mars. Apparently there is only a handful of neuro's that can diagnose it or even know about it and they are in places like Chicago, ,etc. We see our neuro on the 23rd and I'm taking him the information I've gathered on it. Not that it'll matter really. We then have an epileptologist appointment in April of '09. Earliest available date. We see a geneticist on the 27th of this month as well.

I'm sorry this is not one of my positive moments. I"m just really frustrated, tired and scared. Please keep praying for Hannah and hope they can find some answers soon. Seizures we can handle even, but status we cannot. Well, we can, but it is really hard.

Tuesday, October 7, 2008

Recovering

I apologize for just now posting an update. It's been a whirlwind of a few days. Hannah is home and recovering. She went back to school today and other than being a little tired which she will be for a while, she seems like she enjoyed the day.

Things will be a little up in the air for a while I'm afraid. Just a run down of what happened...Hannah went status on Oct. 1st and had to be intubated. She was then placed in PICU. After the status she ran 104 degree temp. They packed her in ice and rotated tylenol and ibupophen to try and get the fever down. It took an entire day for it to go down even with the ice. After the fever came down her CPK levels kept rising. They got near 5000. We stayed longer in PICU due to this level. While in Cook's they did some immunolgical testing as well as neurological testing. The preliminary tests came back alright. There are more extensive tests pending. We should get those back next week. We were released on Sunday to come home.

This episode was almost identical to the episode she had in July. That's two status episodes in less than 3 months. Not good. Her neurologist is concerned and is doing all they can do. The things we are doing right now are all we can do at the moment. Hannah has an appointment with her neuro on the 23rd to just review everything. We have an appointment with the epileptologist in April. Yep, you heard me, April. That's the earliest we can get in. The epileptologist specializes in epilepsy and will do some advance testing. His findings will determine if something more drastic than meds is needed to help Hannah like surg, etc.

On the 27th of Oct. Hannah will see the geneticist to see if there is anything genetic going on. We've been looking at DRAVET syndrome but Hannah fits some of the criteria but not most of it. There is a test that can be done too to determine DRAVET, and we will look into doing it as well. Just trying to get some answers.

The only problems since Hannah has been home is that the last three nights she's had nightmares. SHe's never had nightmares before. She is also breaking out in a cold sweat and is clammy feeling. The doctors seem to think the nightmares are trauma related. I mean this is the second time she's been through this in less than three months. They are suggesting therapy but

I'm not sure how therapy works for a child with autism. The clamminess and cold sweats they think are withdrawals from the narcotics she was on while intubated and trying to get the status to stop. Other than that she is eating alright and other than tiring more easily she seems to be doing fine.

We feel so blessed that we didn't lose our girl. Coming this close in less than three months is hard, I won't lie to you. I cried when I left her at school this morning. I just want to keep her close to me always. I think though that if something were to happen to her, say at school, I'd find comfort in knowing that she was doing or participating in something she enjoyed when it happened. As bad as I want to keep her close and safe, I can't. She deserves to live life to the fullest no matter what. I have to keep reminding myself of that. Hannah loves life no matter what happens. I can't stifle that with my fears.

We thank y'all so much for all the prayers, and notes of encouragment. There is no way to express our gratitude. This is much longer than I intended. Sorry! LOL!

Saturday, October 4, 2008

Tomorrow and Test Results

If everything goes o.k. we'll probably go home tomorrow. Hannah is ready. She's doing alot better.

We got some tests results today. It looks like her immune system is working fine. No abnormalities. Basically the immunologist thinks Hannah's getting all these illnesses and will until her system builds an immunity to them. Most kids go through this earlier than Hannah but since

Hannah was never in daycare or out in public alot she didn't do it then. Now, being in school she is catching everything. (((sigh))) Speaking of school, she is READY to go back. Mom isn't ready but she is. LOL!

That leaves us with the reality that her epilepsy has changed and is worsening. We will see an epi when we get out of the hospital that will hopefully help us find some better control during times of illness. Honestly, I'm terrified. I hate the idea that we could go through this all Fall and Winter everytime she comes down with something.

So, I'll let y'all know if we get out tomorrow. Thanks for caring and all the messages. They have been a great help to us. I hope I can get some time to reply to each individually soon. Please forgive me not being able to. We covet your prayers.

Friday, October 3, 2008

Looking Better


In a Room

We're in a room. P-401. I'm glad PICU is there when you need it, but that's one loud and busy place. Hopefully Hannah can sleep tonight.

I've talked with the Pedi that is going to coordinate her on floor care and he is doing some tests on Hannah's immune system in the morning. He didn't feel like her problem was an immunity problem. He feels like it's an epilepsy problem. Said that her epilepsy could just be changing and getting worse. Not something I wanted to hear.

The neuro came by and he could tell I was upset. We talked some about the situation and I felt some better. He's doing a battery of tests in the morning as well. We will be seeing an epileptologist and the geneticist soon.

Really ones not better than the other. Which do you pick? Immunity disorder or worsening epilepsy? We'll have to take what we get and do what we gotta do. I guess at least we'll know. Maybe.

Hannah's doing better and looks good. She's recovering well. Still hasn't stood on her own yet. We'll try all that tomorrow. Our hope tonight is that she gets a good nights sleep. Her CBK levels are going down so that is a good thing. I talked with the ICU doc last night and he explained to me that status epileptus is traumatic on the body. Hannh's recovered well the last time but each time she has an epidsode her body takes a huge hit. If the status's continue her recovery will start taking longer and longer and even permenant damage can take place. Scary stuff.

Please keep her in your prayers. I'll post an updated picutre.

News & NIght

The ICU docs just made their rounds. CBK levels are going down. We are going to move to the floor sometime today. I inquired about her continuously being sick since May and made it known we wanted it resolved before we left this hospital. They are putting the in house pediatrician on it when we go to a room and they said they would direct us to the help she needs to resolve these issues. Please pray we get some answers. Status epileptus is hard on the body especially the muscles and the heart is a muscle. If she continues to go status we are looking at some damage eventually that she possibly wouldn't recover from.

Hannah did not sleep much last night at all. She was up most of the night. They brought a 7 wk old baby that had been in a car accident in next to us. When the baby cried Hannah giggled. She has the giggles about the silliest things. There's another little girl that is in isolation by us and when people go in they have to put on gowns and masks. Hannah has just giggled and giggled at their masks. Once I thought she was sound asleep so I laid down on the little bed where I could see her but could rest too. I dozed evidentally because I woke up to her falling in the floor. She was trying to get out of here! LOL! Luckily she didn't hurt herself and no lines were pulled out. She just said, "uh oh whoopsie". Needless to say we've not left her bedside for more than a second again. At least we know she can't stand up yet, I guess. Anyway, nothing real eventful happened through the night.

I did get to rest some early this morning. Thanks to my fabulous husband. He got up around 5 and took my place and I slept from 5 to nearly 9 with a few interuptions. Please continue to pray for Hannah. More than anything I want some answers. I want my girl well.

Thursday, October 2, 2008

CPK levels

We are still in PICU. Hannah's CPK levels keep coming back more elevated than the time before. This shows stress on the heart and they will not move her to the floor until those levels go down. As long as they are increasing she needs to be monitored closely. That's the bad news. The good news is that Hannah is off vent, oxygen, cath, and g-tube. She is awake and talking some. Still pretty groggy. We do not know how bad her muscles have taken a hit yet. We know they did because the CPK is muscle related and the tests they did to measure any muscle breakdown showed some. They put her on meds to keep the breakdown from continuing so hopefully they were able to intervene in time. Her fever tried to return earlier but it went back down on it's own before it got too high. That's about all the news I have so far. We have a really good nurse tonight that has Hannah all fixed up for the night. She even helped me comb through the disaster the EEG left in her hair. She's awesome.

Finally Progress

Hopefully, I can post before I get disconnected. In the last 30 minutes they have taken Hannah off the vent, g-tube, and the cath. She's awake and talking a little. She's hoarse of course. They are monitoring her closely. Making sure her blood gases stay good. She's still pretty out of it but steadily coming out. The neuro is going to have them take the EEG off. If everything stays good we may move to the floor this evening or tomorrow morning. They are concerned about the status seizures because they are dangerous and this is the second status episode she's had in the last 2 1/2 months. We'll be talking more about them with the neuro and possibly the epi. I'm going to ask about seeing an immunologistg while we're here. I'll update again soon when I know more.

For those of you that are asking, yes, she can have visitors. Even in PICU. They will only allow 2 at a time to come in. When we go to the floor the number doens't matter. Yes, she can have gifts. The only restriction is on balloons. They cannot be latex.

Please keep praying for Hannah. She's still not out of the woods, but PTL, we're getting closer by the moment.

Trying to wakeup


The night

Hannah rested well through the night. They kept her sedated. Her fever is almost completely gone. She has a few issues due to the fever that they are combatting. One is the break down of muscle tissue. She tested positive for it so they given her medicine to combat that. They are weaning off all the sedatives they were giving her and trying to wake her up. Once they get her awake and she has another good blood gas they will try to take her off the vent to see if she can handle it. I'm waiting on the neuro to come by so we can see what the plan is for today. I'll post again when I have more information. Please keep praying for her.

Wednesday, October 1, 2008

PICU Stay Again



PICU Stay Again

Things are finally settling down some. Hannah woke us up at 5:30 a.m. seizing and by 8:30 a.m. we knew that the ones she was having wasn't going to stop. They were getting more frequent and longer in length. We went to Cooks where she went into status. They stabilized her and got the seizures controlled around 1. We are in PICU at Cook's. Right now they are keeping her sedated because she's on the vent and they don't want to remove it until her blood gases are better. At one point her fever was near 104 so they packed her in ice and was giving her meds to bring it down. It finally started coming down around 7:30. Right now it's nearly normal. They are going to keep her sedated and on the vent through the night and decide waht to do in the morning and see how she is responding. She has opened her eyes and looked at both David and I and responded to us. So, basically we're playing the waiting game again. Not sure what set this off this time. The guys had a mean stomach virus the last couple days and she could have come down with it. She did seem to have a touch of pneaumonia on one of her x-rays too. I know most of this probably makes little sense or sounds like a kindergartner telling it, I'm really close to brain dead. LOL! Forgive me. I'll keep this page update

Seizure day....

We woke up to Hannah seizing at 5:30 a.m. She doesn't have fever. I am waiting until the doctor's office opens so I can call and see what they think. The boys had a stomach virus yesterday so she may be trying to come down with it. I don't know. I'm alone with her today. David can't miss work. They are having lay offs at his job and he needs to try to keep from being one of them. Kyle had tests at college so he couldn't stay with me and Zachary had already missed two days with the virus. I'm always scared. No matter how hard I fight it, I'm terrified. And it's really hard when it's all on you to do whatever is neccessary. Please pray. Thanks.

Thursday, September 25, 2008

Prayers....

Things are looking good still. No more seizures and Hannah seems to be feeling better than she has in quite some time. Let's pray that continues.

I wish y'all could hear her night time prayers. It's the cutest thing. She's heard me praying specifically and now she's doing it. She says, "Lord, please keep healing Hannah's body(she talks about herself in third person still). thank you it. Heal her brain and it's 'mical(chemical) and 'lect'ical(electrical) system. Help her 'nition(cognition) to keep improve. Thank you for healing her body. We love you Lord. Amen" She leaves words out here and there but the gest of her prayer is that she thanks God for his healing and asks him to continue it. Then she asks God specifically to touch her brain and it's chemical and electrical system and her cognition to keep improving. It's just darling to hear.

Please keep her in your prayers

Monday, September 22, 2008

Today was good....

I took Hannah to the doctor this morning and she checked out o.k. She gave me a name to a geneticist and I made appointments with them and an allergist/immunologist today. Those appointments are in October. Dr. Beyer asked Hannah if she wanted to go to school and Hannah said, "I like school" so she went on to school and from what I was told she had a good day.

David and I attended Central Baptist last night with Hannah. They took up a special offering for her to help with the travel expenses we'll have going to Ohio in March. It's been incredible how these people have reached out to us. They've really helped take a load off us with the help they've given. These people are amazing. I'm so thankful that we've gotten the opportunity to get to know them.

People are reaching out to help in ways I never imagined. It seems like every week someone emails me or drops by with a helping hand. They will never know what they do for our spirits. It is so hard some days to just keep your chin up. Yesterday there was a hymn sung about heaven and it's an upbeat, uplifting song. I stood with tears in my eyes. I don't want to lose my girl, and for a moment I almost panicked as I tried to think of someone on the other side that would care for her if God were to take her. I know that's dark, but you can't help but think about things like that when you've been faced with the situations we have lately. It sneaks up on you when you least expect it. You hold on and you present a tough front, but out of the blue when your guard is down, things like that sneak in. My panic eased though as I allowed myself to think about the fact that there will be no more pain, sickness, fear, or sorrow there. I don't want to lose my girl. I don't want to lose any of my loved ones, but I don't have to fear for them. Their Father will be there and He loves them more than I ever could. Sometimes you just have to let yourself think through these things so you can remind yourself of the awesome truth that everything is going to be o.k. No matter what.

Sorry for the ramble. LOL! Sometimes I just let my fingers go and Lord only knows what they type. Please continue to pray for Hannah.

Sunday, September 21, 2008

Unquenchable Spirit....

Last night as David and I was laying in bed with Hannah between us, we couldn't help but realize her unquenchable spirit. It's really quite amazing. Hannah has not been well since May but you'd never know it. Just Friday she had a terrible day. Is she down or depressed? Nope. She's grinning from ear to ear and making us all laugh. This little girl is amazing. I have to admit to you that I'm afraid I do not posess the same unquenchable spirit. I do get down and I do feel defeated. I get depressed even. There just seems to be a peace Hannah has that I do not. I want it too. These are just my thoughts this morning.

Saturday, September 20, 2008

Recovering and improving...

Hannah slept well last night. I gave her the clonazapam when I gave her the zonegran and it made her a little loopy but it allowed her to rest well once she relaxed enough. Today she's ran a little fever and we've continued the tylenol/ibuprophen regiment. We see her pediatrician on Monday. So far no more seizures. PTL! I'm going to call an immunologist on Monday. Please keep her in your prayers.

Friday, September 19, 2008

ER Visit

Well, we had more than one seizure and the second one lasted going on 4 minutes when I intervened with diastat. We took her to the ER and her temperature was 102.7 when we got there. They took blood, urine, and an chest x-ray. Hannah's sick. Again. Her white blood count was 23,000. The only thing they found was a little redness on one of her ears. The doctor ordered a round of rocephin and then gave us a prescription to get filled to continue on antibiotics at home.

The neuro called me when we got home and he is upping her lamictal to 50 mg's morning and 75 mg's night. He also called in a drug called clonazapam that he wants me to give her every 6 hours while she is sick in hopes that it will keep a status at bay.

I'm worried. As usual, right? My worry right now is that I feel like I'm drugging her. I'm giving her tylenol every four hours, and ibuprophen every 6 hours, clonazapam every 6 hours, 75 mg's of lamictal at night, and 300 mg's of zonegran at night. Plus an antibiotic. It's incredible.

Hannah has been sick since May. She never gets more than a day or two where she doesn't have some kind of illness going on. I'm taking her to her pediatrician on Monday and I'm also calling a immunologist/allergist in Benbrook on Monday. We are going to get to the bottom of this. Good or bad news!

Right now she is awake and doing o.k. She's laying up in the bed watching Strawberry Shortcake with David. Please continue to keep her in your prayers. Me too, please. I'm weary.

Seizure day...

Hannah is recovering from a seizure this morning. She was unable to go to school She woke me up at 3:30 just really restless. I thought she might have a stomach ache. Around 7 she was running a fever and I gave her ibuprophen and by 8 she was having a tonic clonic. She came out of it alright. It lasted about 2 1/2 minutes and it was only one. I was sitting there praying the entire time...."just be one....just be one....just be one..." I didn't have to give her emergency med either. I've got a call into the neuro. He's probably going to have me increase her lamictal.

Things have not been too good around here lately. Really stressful. Melt downs have increased, but if a seizure has been brewing then that explains them because she's sometimes really cranky a couple of days before she has one. On Tuesday she basically cried most of the day.

Yesterday I had lunch with her at school. I was a little leary of it because routine is really important to Hannah. Kids with autism actually feel physical pain when their routine is interupted. So, I debated most of the morning and decided to just try it. I think it went alright. She did think she was supposed to come home with me but seemed to adjust when I explained I'd be back later and for her to go with her teachers. It felt good to do something "normal" with her. Something I did often with my boys.

I'll update as needed. Please pray she gets over this virus or whatever it is.

Wednesday, September 17, 2008

Service Dog calls 911

Rover, call me an ambulance — dog calls 911
9/14/2008, 6:38 p.m. EDT
By AMANDA LEE MYERS The Associated Press

PHOENIX (AP) — "Man's best friend" doesn't go far enough for Buddy, a German shepherd who remembered his Michigan training and saved his owner's life by calling 911 when the man had a seizure.

And it's not the first time Buddy has been there for owner Joe Stalnaker, a police officer said Sunday.

On a recording of the 911 call Wednesday, Buddy is heard whimpering and barking after the dispatcher answers and repeatedly asks if the caller needs help.....

Read the rest of the story here....

http://www.mlive.com/newsflash/michigan/index.ssf?/base/news-57/1221421448252630.xml&storylist=newsmichigan

Not a good Day...

Hannah has had trouble going to sleep the last couple of nights. Today she's had melt down after melt down. I don't think she did at school, but she cried all morning at home and started in the van after school when Zach tried to play with her some, and hasn't stopped. I cannot understand what she is saying to me. Something about "happened". It's times like these when I feel completely helpless. If she could at least tell me she was mad, hurting, etc. I think it would help. At least I'd know how to respond. This is when autism really sucks.

Tuesday, September 16, 2008

Aren't they having Fun!?!?


Can you tell that those are Hannah's favorite PJ's? As soon as she walks in the door she thinks she's supposed to change into her PJ's. Yep, she gets that from her mother! I love PJ's too! Hannah LOVES Jeida. She's so excited to see her and really enjoys playing with her. Jeida is so patient with Hannah. I can already see a difference in the way Hannah interacts. She really studies Jeida when she plays and tries to mimic her. That's exactly what we need! PTL! The pictures are blurry. I'm not sure what happened but when I tried to fix them it just made it worse so we got what we got! LOL!






Sunday, September 14, 2008

September 4 paws class gets their dogs...

Hi all! I got permission to post some of the letters and pictures that the September class got telling them who their dog is. A few weeks before we go to training is when we find out which dog is ours. They do not tell you until then because they do not want something to happen that would change the dog you are getting, and you've already attached yourself to the dog. They send an email from the dog to your child telling them about themselves and attach a picture. Here are some of the ones the September class got.

Hello!

My name is Aljax and my best friend in the whole world was Karen but now it is you though I will always love Karen. She saved me when I was a puppy. I lived for a while with a boy named Matthew but he always wanted a Chihuahua size dog and me, well I am not even close to that size LOL Actually I am quite large! I hope that is okay with you. I am the cutes dog ever! At least that is what Karen tells me every day. I am a master tracker with loads of experience! I can't wait to meet you. I am just so excited. It will be so good to be with a boy again and I know you will love me even though I am big, right? Can I sleep with you and be your best friend? Hurry and get here my best buddy Tristan, I am waiting for you! xoxo Ajax

Hello Buddy! My name is Barley. I was named after a very special golden retriever named Barley. Karen and Jeremy rescued him from the shelter and he was the coolest dog. Unfortunately he died 2 days later from a deadly virus they had at the shelter. Everyone at 4 paws was devastated. He was such a cool dude and I am honored to carry on his name and walk in his footsteps. My Mom is a Golden Retriever named Opal. I also live to honor her. She died of Cancer last year so I guess I have a couple of angels watching out for me and I plan to make them proud by being the best service dog to ever walk the earth. I feel like I know you already because they told me so much about you. I am so excited you are coming to meet me! I can't wait to go home with you and snuggle with you in your bed at night. Do you like to play ball and do you like hot dogs? Do you like to smell grass and flowers and things? I bet there are lots of things we can do together! Now I am really excited. I will try not to smell all the blades of grass in the playground so we can smell them together I mean just think how much fun that would be :0) XOXO Barley


Hello Katie

I have been so worried about you! Everyone says you are back home now and all is safe and sound that is so good to hear! I am sorry you have so much clean up to do.If I was there I could help you pick up all the sticks in the yard. I love to do that. I have been working very hard learning your scent from the shirts you wear so I will know you as soon as I meet you! I want to do my very best. I have worked so very hard for this moment. My name is Canyon and my sister Sequoia and brother Yosemite are also in the class as well as our half brother Barley. Our Mom is Allie and our Dad is Hobo and we were born at 4 Paws. I have been working very hard since the day I was born for this day. I am a boy dog but that is okay.If you want to play dress up or have tea parties I will be happy to play with you! Hurry up andcome up here to 4 Paws where it is DRY :0) BTW I hope no more of those big storms ever come our way once I move down cuz I will just have to scare them off! Hurry and get here OKAY????????????????????? XOXO Canyon


HELLO BEST BUDDY! OR IS THAT BFF? I know that is the modern way though I never text myself. My name is Sequoia and I am a member of the National Parks Gang. My Mom is Allie and my Dad is Hobo. I have 2 brothers and a half brother in this class, Yosemite and Canyon and then Barley who's Mom is Opal. Apparently my Dad is quite the "MAN" here at 4 Paws because I have a VERY large family! I hope you do not mind that I am a girl. really I am not a girly girl like Piper, I am more of a tomboy like Gracie. I mean you do not have to dress me in Pink or any thing like that. You can put me in Green Camo and we do not have to play dress up unless we dress like cowboys and Indians or something like that. I love the tracking game best of all. I hope you like it too. I bet you will because there is always a really cool prize at the end of the track! Hurry up and get to Ohio so I can teach you how to play! xoxoxo Sequoia













Hello! My name is Yosemite and I am a member of the national Parks Gang. My brother Canyon and sister Sequoia and also our half brother barley are also in this class. Us Goldendoodles rule! We are the stars of the class. Our Mom is Allie and our Dad is Hobo, Barley has another Mom named Opal. We were all born here at 4 Paws. We are really cool dogs and are the smartest in the class! We are the best trackers also but be careful what you say to the others as we do not want to hurt their feelings. Do you like to play ball? Do you like the tracking game? How about hot dogs? Do you like hot dogs? Right now I get a cool treat when I track but when you get here I will be tracking the best reward ever..... YOU! So hurry up now and head on over here because I am waiting to see you! xoxoxoxoxo Yosemite (YO SEM IT EE) like the famous park. But you can call me MITE short for mighty dog!


Hey Erik, My name is Blue and I am a boy, Black Lab. My real name is Blue's Clue's but they all call me Blue. I am a fun dog and can't wait to play with you. I hope you like to play ball and play the tracking game. Do you like to eat? I love to eat. I love hot dogs especially and Peanutbutter in my Kong. I love Tennis balls too! I want to go everywhere you go and do everything you do and play and play and play! Can I sleep in your room? Will you really, really be my best friend? I never had a best friend before and I have wanted one for so very long. Now it is almost the day you will come and meet me! Not long now. I am so very excited! Hurry up my best buddy ever and get here so we can start having fun! xoxoxoxoxo Blue
My name is Ginny and I am a Yellow Lab. I came to 4 Paws with my kids. They gave us all Harry Potter names. My full name is Ginny Weasley. Two of my kids are in the class too. I have to brag. they are so smart and they get that from me! Potter and Sirius are in the class. We came from a shelter in Kentucky, very nice people from Wayne County found us and told us they take all their special dogs to 4 Paws and that we were certainly special too! I can't wait to meet you. I really don;t mind boys, in fact almost all my kids are boys but I always dreamed my partner would be a little girl! YEAH I just knew it was meant to be because I am just such the little girl's dog! I hope that you are coming to 4 Paws really fast! How long is a week? I think I heard we have to sleep 10 more nights and then we will wake up and find you there! How cool is that! Hurry up my little best buddy, best girlfriend, special partner and keeper of all girls secrets! See ya soon! xoxoxoxoxo Ginny W.






I feel like I have been waiting on you forever. I think you are the most special boy ever for loving me just the way I am. I was so sad and thought no one would ever want me, not that I feel there is anything wrong with me. I can track better than all of them! But you know they gave me that label, sigh. I am so glad you do not care about "labels". I have been working extra hard because I want to be the best service dog ever so you will be so happy with me! I love to play ball and want to sleep in your room. I still remember sitting in the shelter asa puppy praying for a boy to love biut all the boys kept coming and taking other puppies. Karen says that is because I was meant for you and I think she is right! So hurry, hurry, hurry and get here to see me, Okay? xoxoxoxoxo Hans PS Didn't I grow into a handsome dude! Now don't listen to Karen who lectures my ears every day showing them pictures of GSDs and telling them to stand up. I think they give me character!