Saturday, February 28, 2009

A week from today....

I woke up this morning thinking a week from that moment I'd be getting us on our way out the door to start our journey to Ohio to pick up Koolio. I have so much still to do before then! Like find a car to take us up there. LOL! My friend's van broke down that was going to let us borrow it to go up there. It's nearly $1400 to rent one and that will make things a little more difficult.

It's been a rough morning. We moved Billie's brown chair to the livingroom and Hannah wanted to sing this morning so I sat in it and began singing to her. I went through "this is my favorite little girl" and "this little piggie" when she decided she wanted to sing the song about the pig dying and the mamma crying.(you have to know Billie and her songs! LOL! It's not as bad as it sounds!) I couldn't remember the words and I started crying. Luckily Hannah rescued me when she requested "I'll fly Away".

I've really been struggling with everything. Since July our lives have been turned upside down. We've been under constant stress. I know we have to go through the valleys in life and I'm trying to just stand firm and let God do His thing. Still it's hard. I feel so out of control of our circumstances. God is good though. All the time.

I met with Hannah's teacher yesterday. It was time for a parent teacher conference and we'll have her IEP meeting in April when we return from Ohio with Koolio. Everyone seems excited about the dog and it's coming. I'm sure we'll have to make adjustments here and there but everyone seems excited about the experience and for that I'm extremely grateful. I think it will be a wonderful educational experience for the other children too. Hannah seems to be doing o.k. in school. Having trouble with being distracted all the time and we'll need to find a way to help her learn to focus but she's learned alot to this point and for that we're thankful.

David is going to make a trip to the cemetary today and stop by sissy's to get a copy of the funeral service on cd. Please keep praying for him. All of us.

Thursday, February 26, 2009

For Hannah's Room....

Before David returned to work, he went to work on his mom's room. He thought the best thing to do was to make it Hannah's room and to do it asap. We didn't want a "tomb" in the houe and know Billie wouldn't have wanted that. It's been an interesting experience in that we've put most of her stuff in the closet with plans to go through it when we get back from Ohio, and set up the room for Hannah and Koolio. One thing we both wanted was some kind of memorial in there for Hannah. I found this picture which isn't the best picture of Billie but it captured the relationship between Hannah and nanna so well and printed it out. Hannah is in her lap and nanna is singing to her. I also added the Hero card Pastor Gilbert handed out at the funeral and the necklace that Billie had made for Hannah during one of her therapy sessions at the nursing home. I framed all of it and hung it over Hannah's bed. Here's some pictures. David hasnt' seen it yet. I thought I'd wait until he got home to show him. I've cried enough for both of us today while doing all this.





Week ago today....

It was a week ago today that Billie passed away. David IM'd me this morning and he's really missing her. We all are. I know I had to have cried 20 times yesterday. Everywhere we turn there is a reminder of her. I picked up the Brookshires sales paper yesterday and immediately started looking for her favorites on sale. I just started bawling when I realized I'd never take her a paper excited that something she enjoyed was on sale. This stuff is tuff!

Everyone is excited about Koolio. Including her teachers. We all can't wait to have Koolio in our lives.

I'll post more later. I need to get busy.

Tuesday, February 24, 2009

We're home...

As you can see we got Hannah's match yesterday. He's a gorgeous Golden Retriever and his name is Koolio. We are in love with him already. Hannah wanted a yellow and green dog. She got the yellow part. We'll have to buy something green for him to wear. LOL!

Yesterday was a HARD day. I just didn't want to say good bye. Billie left us with some wonderful memories and for that I'm grateful. I just miss her really bad. The funeral was perfect. Just like she would have wanted it. She wanted us to have church and celebrate her life and that's what we did. Pastor Gilbert preached a beautiful message. I could just see Billie telling him to stop it when he called her a hero, but she was and always will be. Pastor Strawn read tributes from David and I and did a great job with his part of the service. There were a couple hundred people there at least. My mother in law was a very loved woman and it was neat to see how many lives she had touched and know that there were so many more than was even at the funeral.

Please keep praying for us. The next few weeks will be hard and we're thankful for the distraction of the dog and it's joining our family. David's family was awesome through all of this and I don't believe they'll let David isolate himself and feel alone. I'm so thankful for the love they all showed us and for the love they had for Billie.

I could ramble on forever and I don't need to. There is alot to do around here. Thank you for your continued love and support!

Saturday, February 21, 2009

A rough day....

Today we we got to go to the funeral home and see Billie privately. We took Hannah but she wouldn't even look at the casket. She threw herself in the floor and began melting down. I only got to stay a couple minutes and then I left David and the boys to have some time with Billie in peace. I don't know what I'm going to do tomorrow with family night and the funeral. I just don't think Hannah can handle it. It's so hard to find anyone comfortable enough to stay with Hannah for any length of time.

Billie looked good. David, Aunt Shirly and Sissy did an awesome job of picking out and making the arrangements. She didn't have on her glasses and the boys wanted her to have them. I called Sissy and they brought them up when they came. I'm really missing Billie so bad. She was my mil but we became really good pals. We fussed and she got aggrevated at me but those times were so minimal. She and I watched shows together every week. We hung out. Even in the last couple of years when she couldn't go or didn't feel like going anywhere, every payday, hers or ours, we'd splurge and buy us some KFC for lunch and hang out in her room eating our lunch and watching a show or talking. The hardest thing that I've ever done was letting her go to rehab in Denison. I cried for days over it. Looking back I'm glad she did go to Denison simply because so many people got to see her that would have never gotten that opportunity had she not. They all needed to see her and she needed to see them. Still I miss her like crazy and I have been for weeks.

The next couple of days will be a whirlwind. Hannah seems to be over whatever was going on medically for now. SHe hasn't run anymore fever. Please continue to keep her in your prayers. Thank you for all the support and prayers. We feel them.

You can view Billie's obituary at this address. We're going to add pictures asap but they are all on my home pc. http://johnsonmoorefuneralhome.net/obituaries.htm

Today's stuff...

Hannah had a good afternoon yesterday. She slept until around 2:30 and then got up and started playing, talking, and wanting to eat. We were relieved.

We're taking the dress that Billie will wear for the funeral to the funeral home this morning and they are supposed to call when she is ready. David and I will take the boys and Hannah up to see her privately today. We are worried about Hannah's reaction. It's so hard to know what to do where she is concerned. I think I'm going to see if I can't get someone to sit with her in the nursery during the funeral. I just don't think she'll handle all the mourning very well. The graveside may not be as bad because the casket will be closed. I don't know. SIGH!

I made a trip back to Hillsboro last night to get a couple of things. I was crying one minute and laughing the next as I searched for a paper that was supposd to tell us exactly what she wanted at her funeral. First I had to crop a picture to send to the funeral home for the program. Then I started my search. The first thing I came across was a letter to Hannah with some nudy pictures of her in the bathtub and it was telling her that no one saw them but her, and her mom and daddy but she wanted her to have them. LOL! I then didn't find what I needed so I reached up into a box in the top of her closet and on the top it said, "David, do not let Marcey throw this stuff away before you go through it. You, the boys and even Hannah may want some of it. Love, Mom" I died laughing. It was SO Billie! One of the most touching things though was every piece of paper that I had given her that said, "I love you" or "I love you bunches" that I ever gave her she had kept. It seems that my love was more important than I could have ever dreamed it was. I certainly did love Billie.

I will keep everyone updated as much as I can. We will still get our matches on Monday.

Friday, February 20, 2009

Funeral for Nanna

Billie's funeral will be Monday at Truth Tabernacle in Denison at 1:00. Family time will be from 4 to 5 on Sunday at Johnson Moore. She will buried in a cemetary going out towards Tom Bean. I will have to post it's name later.

Hannah had a seizure at 3 am and we had to take her by ambulance to the hosptial here in Sherman. She came home and is recovering. She's slept all morning so I'm not sure how she's doing other than sleeping.

I'll post more later.

Thursday, February 19, 2009

Billie Passed Away

Mom, Billie, Nanna, passed away this morning. I'll post more later.

Billie

The nursing home called David and said that they think Billie had another heart attack and that she was not responding. He's on his way up there now. I'll post more when I know more! Please pray!

Wednesday, February 18, 2009

No news yet...

In my excitement yesterday of knowing we'd find out our match on Monday I forgot to tell y'all about the eeg. It was a rough one. LOL! Hannah has to be sleep deprived so I put her down around 11 that night and got her up at 5 the next morning. The only available appointment was 3:00 p.m. I sent Hannah on to school and she did o.k. but when we got to the office they were running an hour behind and well, that was all the princess could take. She did not cooperate witht he eeg technician at all. I'm not sure how he got what he needed to get done, done but he did. I wouldn't be surprised if they didn't get any useful information simply because she was kicking the wall and her daddy's head through most of the test. We can always hope. So, I'm still awaiting test results and a call back from the epi. I'll post as soon as we know something.

My brother brought down Hannah's bed last night and spent the night with us. When I told Hannah Uncle Mike was coming she said, "and aunt Christy". She loves her Uncle Mike and Aunt Christy! She played hard last night. LOL! Uncle Mike wore her out. We had a very intersting moment and had to celebrate. Hannah walked over to my brother and he had his work badge attached to his shirt. She touched it and said, "uncle mike, what is this?" I about fell off the couch! We had to celebrate and tell her how good it was and the whole time she was looking at us like, "these people are so easy to please...." LOL!

Tuesday, February 17, 2009

Matches on Monday!!!! Keep your fingers crossed!!!

This has been a fun experience. There are 5 papillons and they are like the 4paws "mascots". Anyway, as each class draws near the class send bribes, poems, and songs to these dogs to encourage them to sneek a peak at the LIST! The list being the list of matches. So far our class has sent a huge box of things for the pink girlz and the pinkettes, a box of chocolates to Jeremy the trainer, and a cookie bouquet to the entire staff. Plus yesterday one of our class members bought a cut of beef and cooked it up, put it on a plate, and wrapped it in a box for Yoda(the male pappilon). It's really silly fun to help take some of the stress out of the wait.

We got this email from Yoda today....

Yoda here

Okay I have a plan.... with the bait in hand (thanks for sending it) I plan to make my move Monday. In the meantime I am training intensively with Gracie (Piper is still too busy with the little ones and is on family leave). I think I will be ready by Monday and we are formulating the plan. More details later....


So, we should know which dog is Hannah's by Monday.

I'm posting some pictures of the mascot dogs....


Gracie
Piper

Pinkette Eliana



Pinkette Raziela


Yoda

Friday, February 13, 2009

Epi ordered EEG

I heard back from the epi today and he has ordered an eeg for Monday. He wants to see if he can see anything going on. I sent him a letter today via fax and he was going to review it and give me a call back on Monday. Please pray he'll take my concerns seriously. We only have 3 weeks until we go to Ohio to get Hannah's dog and I'd like to have her settled more before then. All these new seizure developments have really got me worried.

On top of that Billie is having some difficulties and having to have tests. She's also very fearful of it all and panicing. Please pray for some peace to cover her. Poor David is so torn between trying to be here for Hannah and being there for his mom. I feel so bad for him but the things that are going on with Hannah are things he needs to be aware of and involved in. I don't know what to do sometimes. I think I should just do it all myself but I can't. Hannah needs her daddy. Please pray for him too.

Hannah had her Valentine's party at school today. She was a really huge brat during most of it. I'm so ready to have my sweet, good natured little girl back. I hope she can be recovered. This is all so unfair. I try hard not to talk about the "fairness" of all that has happened but this one is a hard one for me to get over. I want my lover of life little girl back.....

Thursday, February 12, 2009

Can I just be real for a moment...

I'm losing my mind! I'm so tired I can barely think. Hannah's started having absense seizures. She's always had them but only a handful in her lifetime. Since last week she's been having numerous everyday. Her teachers are keeping a log for me so I can let the neuro know. She's not sleeping well and being a total pain to get up in the morning too. I do know that she is cutting some molars so that can cause her to be irritatble too. She's being a total toot though. Making a million messes in the hours she's home. I literally fall into bed when I put her down because I'm so exhausted and then it take her hours to go to sleep and I can't sleep because my house is a mess and I have too much to do still.

I called her neuro to report the seizures and found out that he has "bowed to a higher knowlege" and is no longer Hannah's doctor. She is now in the hands of an epileptologist she has never even seen. Which I'm looking forward to seeing him and praying he will listen and help us, but that appointment isn't until April. I'm a nervous wreck about this new seizure activity. We are only 26 days away from getting her dog and we'll be across the country doing that. Away from her doctors. It's just all nerve wrecking.

Speaking of going to Ohio, we do not have all our funds for travel expenses. I'm going to have a garage sale next weekend so if you have anything you'd like to donate to it, just let me know and I'll make arrangements to get it. I thought I'd have plenty of time to have some events but with all Hannah's ordeals and then Billie's, time just got away from me. We wouldn't have any of it had Central not had that garage sale for us, took up an offering and Vicki hadn't throwed that shower for us. So, keep your fingers crossed. We've only got 26 days to finish getting everything together.

Since I started this post I had to stop and go to the school and get Hannah. She began crying after lunch and didn't stop. Something is wrong. You know I think I could handle ALL the other autism characterisitcs without a blink but her not being able to tell me what is wrong is the WORST!!!!

Sorry, this isn't chipper but I've run out of chipper the last few weeks. Things have been hard. Don't get me wrong. I'm not giving up or losing hope. There has been some amazing developments in the midst of the trying ones. I'm just tired and on empty in the chipper department.

Thanks for all the support.

Wednesday, February 11, 2009

Seizures and Billie

Hannah is continuing to have absense seizures. I've got a call into the neuro. Not that it will do much good, but I still need to report them. We can't get her dog or see Dr. Malik soon enough! The dog is in March and Dr. Malik is in April.

Billie called me while ago and her hemoglobin count won't come up so they are going to take her to the hospital tomorrow to give her some blood. She is also going to have to stay past her 20 days. She's still not strong enough or able to get around well enough to come home. She's nervous about the blood and upset about not getting out yet. Please keep her in your prayers.

Tuesday, February 10, 2009

Oh, she's turning so girly....

LOL! Night before last I thought Hannah was asleep so I was going to move her doll from a rather awkward position. She grabbed that sucker and wrapped her arms around it so tight. It was the cutest thing.

Last night she found a Disney princess purse that was bought for her YEARS ago and she never paid a bit of attention to it. Well, last night she did. First I had to cut the tags out of the inside. She can't stand tags on anything btw. Then I put a few things inside it. She was in HOG heaven! It was so cool to experience!

Are y'all tired of all my rants of all these little insignifican things? I'm telling you, having a child with autism really makes you stop and appreciate those "little" things. And you know what? There really is alot of joy I'm convinced we miss because we're always looking for those huge things. There are so many more small experiences in life. So, if we can enjoy the small, maybe we'll enjoy more of life. You think? LOL! I'll quit now!

Only 28 more days!!!!!!!

Monday, February 9, 2009

Shower photos

This is Hannah with Tobi. She was VERY interested in everything Tobi did but kept a small distance. I can't wait until she has her own dog and has time to bond with it. She's been very intersted in animals lately. We've had a cat for 14 years and she's never paid any attention to the cat. Now she follows Precious around everywhere she goes and is always wanting to pet her.
Another photo of Hannah and Tobi.

This is Tobi. One of the ladies helping with the shower came in and asked Tobi if she could pet her and Tobi shook her head yes. It was the talk of the day. LOL! They could not believe the dog understood her and responded.

This is the cake. Vicki brought it and it was almost too adorable to eat. Nobody wanted to cut it.






Saturday, February 7, 2009

Shower

There were about 15 people there including us and Vicki, Javan, & Fred. The cake was adorable. Tobi; Javan's service dog,was incredible. I got to see Jennifer and Chaney which I hadn't seen in FOREVER! The turn out was disappointing but that's life. That's about all there is to say. I'll post some pictures later.

Friday, February 6, 2009

March Miracles '09 and stuff

Every 4paws class comes up with a class name. Our is the March Miracles. Isn't that perfect?

Please pray for a friend our ours named Kira kilpatrick. She went 25 months without a seizure and started having them at 4 a.m. this morning. She's the same age as Hannah, and will be getting her dog in March too. It's so hard when you get a break like that and then it starts all over again. Of course it's hard no matter what. Just please keep her and her family in your prayers. It'll be a tough few weeks for them.

Yesterday Hannah's teacher called me and said she thought Hannah was having some absense seizures and was just a little "off" acting. I went up and observed her for a bit. Well, I went up and she climbed in my lap and just laid on me the whole time I was there. I decided to take her home. She just wasn't feeling well. She was having some absense seizures but it didn't progress anymore than that. Don't get me wrong, absense seizures are not good, but they aren't lifethreatening as others are. She seemed fine today so she's back at school.

Hannah's been a real toot lately. She's making messes constantly. Has started this screaming thing which we are trying to nip in the bud right now. She's just acting really bored or has gotten extremely curious. LOL! I'm worn out by the time I put her to bed every night. It's CONSTANT messing. I clean up one mess and she's makin another while I clean that one up. I will be glad when this phase is over. Hopefully it will eventually pass. I can hope.

Tomorrow is the "dog" shower. It should be interesting. We're nervous about it. It's hard to let people help but we need help. People have been so kind to us though in helping in any way they can and being so interested in Hannah and how she is. It's amazing. God has really blessed us with an outpouring of kindness from His people.

I should get busy. I'll post pictures of the shower tomorrow evening.

Wednesday, February 4, 2009

$20,000 a week therapy

I found it interesting that I was talking with my therapist today about Hannah's behavior and then I got this in my email from my husband. You have to read it. $20,000 for a week of therapy. A much needed therapy. No wonder parents of kids with autism feel so hopeless. Not many of us can pay $20,000 out of pocket for a therapy. No matter how bad we need or want it.

Take a look.... http://www.cnn.com/2009/HEALTH/02/04/autism.resolution/index.html

Monday, February 2, 2009

Whirlwind Weekend!!!!!

We're back and recovering. On Friday I got the kids out of school and we headed to pick up David before heading on to Denison for a weekend of visiting Billie. The traffic between Dallas and McKinney was hideous! It took us an hour and half to go 30 miles. RIDICULOUS!!! We're told that is just a Friday occurance. I sure hope so. There was no wrecks or anything and it was just awful. Anyway, we got to the nursing home around 8 and visited with Billie until a little after 9. She looked really good. Just a few days and we could tell a huge difference. We left and spent the evening at Mike, Christie, and Baylee's house. Hannah did really well the entire trip and visiting Friday.

Saturday was not quite as good. She had a horrible morning. Melt down after melt down after melt down. I thought I was going insane. Finally we got to the nursing home around 1 and visited with Billie for several hours. Luckily David brought his laptop and when it pooped out Leeci let us use her portable dvd player so Hannah stayed occupied with videos and playing with all of us most of the time. We left Billie knowing she was on the road to recovery. She just really looked that good.

We stopped by my mom and dads and visited with my mom and nieces for a bit. Didnt' have as much time as I'd have liked to have had, but at least I got to see them. My dad was out and about so I didn't get to see him. Hannah enjoyed a box of toys Katie pulled out for her and playing with my mom. Giving her kisses and hugs.

We ran back my brother's house and had dinner before heading back home. They were kind enough to give us a portable dvd player which will be great on the trip to Ohio to have and Hannah had a pretty good drive home that night.

We've spent today doing laundry and getting everything done that we were unable to do before. Hannah's got a respiratory virus but seems to be combatting it alright. We all fought it over the weekend. She just happened to get the worst of it today. YUCK!

We are only 35 days away from meeting Hannah's service dog! It's so exciting and so hard to contain that excitement. She is really interested in animals lately. Which makes the timing of her getting the dog perfect. She's still sleeping with her baby doll every night too. It's the most adorable "neuro typical" thing she does! LOL! I'm going to snap a picture soon.