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!!!!!!! :<)
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.
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...... .
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!
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!
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.
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.
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!
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!
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!
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.
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.
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!
Hannah in hospital and Koolio helping her feel better
Hannah is a 7 yr old little girl who has epilepsy, autism, mild cerebral palsy, SID, and CLD. She attends school where she is in a special needs classroom. She receives occupational, physical, and speech therapy. Hannah is confined to home a lot due to respiratory illness’s and in the summer due to lack of body temperature control, a side effect of her seizure medication. None of which can keep her down. She's one strong little girl. I think you'll enjoy getting to know her...
Email from Koolio...(Hannah's service dog)
Hannah, Yoda here with my friend Koolio who wants to speak with you. He is a pretty cool dude that Koolio and you are so lucky he is going to be your partner!
Koolio here! How are ya girl? I am so excited we are partners! I feel like I already know you because I have been getting to know how you smell. I have been working so very hard to be your best friend and help out when you need me. I want to sleep in your room, and even though I am a guy, well you can play dress up with me if you want to and I am sure I can sit through a tea party or two. Whatever you want to do is fine by me. I am just glad to be with you! Hurry up and come here to Ohio because I am waiting for you! Counting the minutes..... xoxoxoxoxoxo Koolio