Thursday, April 30, 2009

We're in Cook's....

We were admitted to Cook's early this morning to do a 24 hour video EEG and before we go home tomorrow Hannah will have an MRI. Koolio is with us and he's been a hit. He's done an awesome job taking care of his girl. Here are a few pictures.

Sunday, April 26, 2009

This week....

This week will be a busy one. Monday we may be getting me a new car. My van is finally pooping out. Pray we can find something nice and affodable. Tuesday is mine and David's 19th anniversary. We have no plans but still, it'll be our anniversary and that is special. Wednesday I'll spend the day getting ready for our two day hospital ordeal on Thursday and Friday. Saturday Hannah's aquatic therapy starts back up and I will go get Leeann in wichata so she can go to the prom with Kyle. Do you believe me that it will be busy?

It's seems we've been nonstop this year. Some down time would be so nice. Just a weekend of doing nothing but reading books, watching movies, or even shopping with a friend for an entire weekend. Awwwwwww.....I can dream. LOL! Those days are LONG gone and that's fine. I have a good life full of wonderful blessings!

Please pray for a smooth Thursday and Friday. It'll not be fun that is a given. Hannah will go in early Thursday morning and be admitted to the epilepsy unit. They'll start her 24 hour video eeg and then remove it on Friday morning. Before we go home though she will go down for an MRI. They have to sedate her for it so it will be a several hour ordeal. We should get home sometime early afternoon I hope. I'll try to post some from the hospital to let everyone know how it is going.

The boys are on their own for those two days. Nanna's not here anymore. Some friends of theirs are going to help out but it's still hard. They've always had nanna. Of course I can't help but worry. Ugggh! LOL! They'll be fine. Our neighbors are awesome and will help if it's needed. Kyle will be 18 in December and Zach 16 in November. I can't believe they are so grown up. Boo Hoo. :<)

Koolio is doing awesome. We've had a really awesome week with him. He's such a blessing to have with us. We all are in love with him and can't imagine life without him.

I better get busy around here. David is out working me and we can't have that! LOL!

Friday, April 24, 2009

I had to share this....

Hannah is a wild sleeper. She is all over the bed. I took this picture at 5:45 a.m. The night started with Hannah where Koolio is in this picture and he was on the opposite side towards the end of the bed. Sometime in the night this happened. I'd loved to seen how it played out. Anyway, I thought it was cute and had to snap a picture! Enjoy!

Monday, April 20, 2009


It's been almost a week since I posted and some are having withdrawals I'm told. LOL! I'm glad my life is so interesting to read. NOT! :<) And yes, I realize that "NOT" is so 80's but hey, I'm an 80's girl.......

Hannah is doing much better. She seems to have a cold but it's improving. She saw Dr. Beyer on Friday and checked out o.k. Koolio went to the doctor's office with us and he was a hit. Everyone was crazy about him. He was such a gentleman. He's a big boy so it's difficult for him to stay out of everyone's way but he tries. He sprawls out when he's in a down which is adorable but it sure makes it tough sometime to all fit in small places. LOL! He tries to be considerate though. It's so sweet. Koolio is sleeping with Hannah in her bed all night now and he's being much better about leaving the chicken nuggets alone. Yipee! Hannah went to church with David Sunday morning and I thought I was going to stay with Koolio at home. The pastor's wife is extremely allergic to dogs and has been really struggling with breathing lately so I didn't want to expose her to something that would make it worse. Koolio was very unsettled. He was looking all over for Hannah and nervous. I think it is so neat to watch him do his job. I texted David and we thought we'd try to take him and just stay at the back of the church. Koolio was amazing. No one would have ever known he was even there had they not seen him come in or the pastor had not said something. He went into a down under a pew and was awesome through the entire service. I was so proud of him. Oh, and I wasn't sure we'd ever ue the nuzzle command but I used it alot last week and it worked every time! I could go on and on about all the wonders of Koo Yoo. He's just truly an amazing animal. We're so fortunate and it's because people helped us that we have him. Thank you so much.

Some of you will find this surprising but some of you won't. We are going to move this summer to the city. We've been debating this for a couple of years. Hillsboro has been good to us. Hannah has had fabulous teachers, therapists, principals, and support staff here. My boys have had a great school experience ever since we moved here in 2001. The community has been a tremendous support to us and church has been amazing. This is not a decision we've taken lightly. We've spent agonizing hours talking, praying, talking, and praying more. Last week after talking with Hannah's epileptologist it was the only thing that made sense, and we felt that we recieved confirmation on what we should do. To help Hannah have any semblance of independence one day she needs support programs that are only offered 35 to 70 miles from Hillsboro and for them to be effective she has to experience them regularly. I'll be sad to leave this community that we've called home for eight years now, but I'm getting excited about all the new opportunities we'll have too. It's not all figured out yet. We have to find a house. Kyle may stay here and finish his senior year. Zach will come with us and I think he'll enjoy all the opportunities a larger school will afford. David will be within 30 miles of his job which he has not experienced in 12 years. I'm excited about all the opportunites Hannah will have, and there is respite care for special needs familiy's so David and I may actually get to go on a date every now and then. LOL! Our 19 year anniversary is next week! I'm a little anxious about living in the city but everyone thinks I'll really enjoy it so I think it's worth a try anyway. Especially in light of all that Hannah will be able to experience.

Well, David is home and wants to eat so I guess I better feed him. I'll post more later.

Monday, April 13, 2009

Weekend, Epi appointment, Koolio's visit to Harwood, and...

First before I do anything, I want to say how thankful I am for the shed blood of Jesus Christ and his resurrection. I do not know what I'd do without the Lord. He's my strength and my hope.

This weekend was a toughy. It's super hard when Hannah is sick on the holiday's which happens quite often unfortunately. She just had a rough time this entire weekend. All week I kept telling David that something was amiss. She just didn't act "right" and neither was Koolio. They were both "off". Around 2 a.m. Friday morning she began the silly talking out of her head stuff so I got up and checked her. She was running fever but the talking out of her head thing is always a prerequisite to a VERY high temp. So, I gave her ibuprophen and David decided he'd sleep with her just as an added precaution. He had just let Koolio out to go to the bathroom and Koolio was hanging with one of the boys in the living room when she had a seizure. I heard it on the monitor. David was with her. Koolio beat me to her room. The first seizure went over 5 minutes so we administered diastat. She finally came out of it and in less than 10 minutes she began having more. We called 911 and they took her to Hill. In transport she quit breathing on them and they thought they were going to have to intubate her. She began breathing on her own again and the decision was made to send her to Cook's. She did fine in the helicopter and when David and I got there she was sleeping peacefully. They did a work up and everything came back o.k. and she was stable so we got to bring her home on a klonopin regiment and decreased diastat dosage. She slept o.k. Friday night with me and then on Saturday began coughing horribly and has continued to cough horribly since. But no more TC's since Friday.

Today we met Dr. Malik finally. We saw him fleeting at Cook's during one of Hannah's admissions but not one on one. Today she had an appointment with him. I felt confident that he was going to try to get on top of what is going on with Hannah. He has ordered a bunch of tests and has made a couple of referrals to others to get some other needed information. He ordered blood and urine today. Did I ever tell y'all that I have the bravest child on the face of the earth. We got the blood work at Cook's and she got up in their purple chair and let the lady do whatever she needed to. They brought in a lady to help distract Hannah but it didn't work. She just watched everything the lab tech was doing. The lady stuck her twice and Hannah didn't even flinch. I was a basket case and my angel was just looking at what they were doing. I don't know if she was trying to show Koolio what a big girl she was or what! Anyway, he also has ordered a metabolic work up with a metabolic geneticist as well as he wants her to be seen by The Child Study Center and their developmental pediatrician. He's ordered a 24 hour video EEG and an MRI. He is changing her meds to Depakote and getting rid of keppra, zonegran and lamictal. He has several meds we can try if depakote doesn't work. He also said that depending on how depakote goes and what he finds with all the other tests we may discuss a VNS. So, once again the next few months will be hectic. I'm really overwhelmed today for some reason. I mean, I wanted someone to get to the bottom of this if there is a bottom. I sure hope there is. I'm tired of doing things in vain, and Hannah deserves a break. Enough is enough. At any rate, I really think I like Dr. Malik and am feeling confident that someone is working to help us help Hannah.

Koolio also made a trip up to Harwood today. Without Harwood we'd not have gotten Koolio. They are a wonderful bunch of people that have been a blessing to David and our family. Of course he showed his stuff. He prissed. It was hilarious. It was interesting to see him constantly looking to see where Hannah was though. He has to keep an eye on his girl. I think he made an impression. How can he not!?!? He's such a handsome fellow.

I need to get dinner going. Please keep us in your prayers. We still have so much goign on and need the strength to get it all done. Thanks for everything.

Saturday, April 11, 2009

Poor baby photos and Hannah and the kool man going to bed

Left Arm....Hannah is one tough cookie! These pictures do not do her bruises justice. I'm always afraid to take her out in public for a few weeks until these clear up for fear someone will think we beat her. :<(
Right Arm....I didn't get her hand in the picture but it's got two huge bruises on it too. All from sticks because her veins have alot of scar tissue in them from all the iv's, pic lines, etc. she's had in her lifetime. :<(

Hannah and her Kool Man!

Another Hannah and her Kool Man! He gets right up next to her when he puts her to bed.

One more of Hannah and her Kool man going to bed. Hannah's bed looks a mess I know but it has nanna's pillow and blanket in it as well as a few other things that Hannah insists be there.

seizures and care flight....

Hannah had seizures at 5:30 yesterday morning. She quit breathing on way to hospital but started breathing again on her own. She was care flighted to Cook's where she spent the day. She was stabilized and came home yesterday evening on a klonopin regiment and a decrease in diastat administration. They believe the respiratory distress was caused by the dosage of diastat being higher than she can tolerate. At any rate we're home and she's recovering. We see the epi on Monday. Please keep us in your prayers.

Thursday, April 9, 2009

What a week!

This week was challenging. Koolio is a great dog but he's a dog. He loves Hannah's chicken nuggets which does not make her happy. LOL! I'm not sure how to get it through his head that he needs to leave it alone. It's like as long as he's in an under he doesn't touch a thing but if he's up and around everything is fair game. He also was not doing well obedience wise at school this week. Not obeying commands and even barking. I think he's probably just testing the waters to see what he can get away with but....I've got a call into the trainer for suggestions. We have 4 days to work on obedience before he returns to school on Tuesday. He's not a bad dog. He's actually quite amazing. There are just a few things we need to work on and that was expected. He and Hannah are getting closer and closer. She calls for him often and especially when she's upset which is wonderful to me. If he can be a comfort to her, then YIPEE!

Oh, I was so thrilled today. Hannah's teacher said she ate some of her hamburger at school today and all her tator tots! She ate something besides a chicken nugget! That's exciting! LOL!

Last night we went to let the GA's at Central Baptist meet Koolio. They asked really good questions and were so sweet to Hannah. Koolio loved doing tricks for them. Rachael took pictures of them as a group and I had my camera in my purse but my brain dead self didn't remember it and didn't get a picture. Hopefully, she will be able to send me a copy and I can post it on here. These leaders and girls were lifesavers and will always hold a very special place in our hearts. They'll be amazing women some day.

On Monday Hannah sees Dr. Malik (epileptologist). I'm anxious about it and hopeful too. Hannah's had seizures since she was 7 mths old and just now her neuro turned her case over to a epilepsy specialist. It took us 7 mths to get into him. I've sent him a letter several months ago outlining Hannah's seizure history and my feelings about her past and current treatment. I never know how a doctor will take me. Some think it's great that I'm so involved in Hannah's treatment and others don't appreciate it at all. So, if you think about it Monday around 11 a.m. say a prayer for us. We really feel a change in medication is warranted becasue of the emotional disturbances Hannah's experiencing and continued seizures of different kinds manifesting. On top of the past three status episodes she had. Of course changing meds is scary stuff too, but after Keppra was added our little girl became miserable and cries alot. It has kept her from going status but hopefully there is something else that will do that too.

There are 13 fires in counties west of Dallas. Please pray for those affected.

Sunday, April 5, 2009

Completed first week

Koolio finished his first week at school without me. I think overall it went well. There are a couple of things we need to work on but for the most part it went great. He saw the vet on Friday to get his heartworm started. They thought he was gorgeous. LOL! Of course EVERYONE says that about him. He's going to get conceited.

He and Hannah are still bonding. He is preferring David or I right now so we are going to have to work on that. We need him to prefer being with Hannah. She likes him but she is really put off by his slobber and licking. It's sensory. I don't like it either. I'm tolerating it, but it's taking effort. We love the dog, just not the slobber. He's not overly slobbery or anything. It's sensory on our part. LOL! The guys are all fine with it.

David went to Denison on Friday night to pick up the rest of Billie's stuff from Denison. He stopped by to get information on grave stones and then visited the grave yard. He took some flowers from all of us. I had a hard time yesterday when he was bringing some of it in. I had already had a "moment" when I found her cup that she used to drink her water and tea in, in the back of the fridge. I didn't want to wash it. It was just so final to me. This morning Hannah and I were playing and my heart broke knowing that she'd never sit in her nanna's lap and sing the songs she loved so much. She still doesn't understand. She knows nanna's not here but she doesn't understand why. She finds pictures of Billie and puts it to her forehead and says, "kisses nanna, kisses, ahhhhh, nanna". It's heartbreaking. I miss her so bad most days. Especially if I have a little down time. My down time was spent sitting on her bed watching shows and talking. We had some great conversations and fusses. LOL! Yesterday when I was at Brookshires I kept finding myself looking for something she might eat or would enjoy. They say it gets easier, but I just don't know....

I have a couple of pictures of Hannah and Koolio going to bed that I'll post soon.

Thursday, April 2, 2009

The zoo, Photos, Texas Thunderstorm, and gate...

Hi all! We survived the zoo yesterday. Koolio did an awesome job. He was pretty overwhelmed by the scent of the place and his poor nose has to be very tired today. LOL! He did not like the bison(did you know they growl), the giraffes, or the tigers. We didn't get close up to any of the animals. I let Hannah's teacher take her to see the animals and we stayed back some. I just thought for a first zoo visit Koolio needed to see that it would be o.k. Well, I take that back. We did get close to the giraffes. He pulled quite a bit and heeling was a little challenging but I could not believe how awesome he did. I thought for sure he'd pull me way more than he did and even expected to be on the ground at least once. LOL! I had called before we went and asked about him being with us. The lady told me it was fine. No problem, etc. We walked in the zoo and by the time I got to the first exhibit I was pounced on by 4 zoo officials telling me I couldn't have him there. I told them I had called and was told he could be there and then they started asking about his service dog certification, etc. What kind of dog was he. Who is he for. I told them. Showed them his tags and his certificate card and then they just let it be, except I noticed that we were followed by one of the zoo officials through the entire zoo. She tried to be inconspicious but did not do a good job. LOL! Mrs. Skelton(Hannah's reg ed teacher) was ready to aide me should I need her to back me up! She's so awesome! So, I think it went really well overall and we'll definately go again.

After the zoo we went to the park and had a picnic lunch and played on the playground afterward. Everyone was amazed how Koolio just sat there while everyone just ate including myself because at home I'm constantly telling him no. LOL! A man came by about a block from us on a horse and Koolio was scared of it. Growling and barked but he didn't get up or anything. I was really impressed. Hannah had a great time among her regular ed classmates. They all love her and it was so wonderful to see her have such a great time.

When we got home yesterday Koolio was pooped. He lay down and didn't get up for a couple of hours. I felt so bad. Like maybe I overworked him. I hope not. He seems fine this morning.

We did get a baby gate and used it until around 4 a.m. this morning. That is when Koolio experienced his first Texas thunderstorm and he was SPOOKED. He wanted daddy! LOL! I didn't want him to wake up Hannah so I took the gate down and let him sleep in the room next to dad for a little while until it was over.

Time to get this crew to school! Here's a few photos from the zoo!

Hannah's teacher; Mrs. Mobley so graciously took this photo of us when we had finished going through the zoo and was getting ready to load the buses. We were pooped!

The Kool Man at the park while we all ate our picnic lunches. He was so good.

Mr. Koolio at the zoo. We weren't allowed in the Brazos exhibit so he and I chilled while waiting for the others to come out the other side of it. Isn't he a gorgeous fellow!?!?

This is Koolio on his first bus ride. He did great. He sat in the floor there and back.

This is Hannah and Mrs. Mobley(her teacher). She is the bestest teacher ever!

This is Hannah enjoying her picnic lunch. She really had such a great time I think. I was so excited to watch her have fun with her NT peers!