Appt. Set

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

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

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

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

Our Howling Dog

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

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

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

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

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

School Days

Tonight we say goodbye to Keppra. Hannah will take her last dose. Tomorrow we will be at full dosage on tegretol. Please keep her in your prayers.

I really feel blessed today. Laurie emailed me and said her husband was going to be in Hillsboro and she had some things we could use for Hannah's school room theme. I met Max today to pick them up and Laurie went all out. I could hardly wait to get home to see Hannah's face when we opened it all up. She did not disappoint me. I don't think I've ever seen her that excited about something before. She has had the time of her life with it today. I'm going to post pictures of some of it. We haven't even put it all up yet. Thank you Laurie and Max for such a blessing today. I cannot express what your kindness did for our hearts today. Thank you so much!

I'm going to a workshop in Abilene tomorrow and will be gone most of the day. I'm really anxious about being that far away. David will be here to handle Hannah and he does a great job but I just am so fearful lately. I'm sure the time away will be good for me, but it's not easy to take it. Thanks for your continued prayer and support. It means the world to us.



Part of Hannah's school room



Hannah and part of her school room



Hannah and part of her school room



Part of Hannah's school room

Bye Bye Keppra

We're down to 1 ml twice a day on Keppra. Friday night should be the last dosage. The crying has gone WAY down. She has meltdowns but they're back to the normal amount and not the constant that they were before. The screaming is still going on. I'm told by the epileptologist that this should go away as her body adjusts to the meds. Let's hope. It's a little more barable and not quite as much as it has been. She's still more tired than she has been. She doesn't sleep though, just kind of lays around alot. Last night I brought to David's attention that she takes 10 1/2 pills every night and that doesn't include the 1 ml of keppra. She takes 5 1/2 in the morning.

She's missing school alot. I'm doing activities with her at home. Letters, numbers, shapes, colors, and matching. Keeping up with her site words too.

I'm thinking about getting her a little pool so she can play in the mornings before it gets too hot. Wanted to get one Koolio couldn't tear up but they don't sell them around here. The hard plastic ones. There are some blow up ones with awnings but I'm afraid the dog will tear them up. Any suggestions?

It's hard to believe the month is almost over. Please continue to pray for Hannah and as soon as I get some information I'll share it. I've posted a small video of her singing. Hope you enjoy it.

I'm still working on getting the pictures of the Mikasa stuff up and posted. They'll only be on this site until they are sold. Please consider buying. It's all brand new stuff that has never been used and most of it is discontinued so it's rare and collectible. All proceeds go to help with Hannah's expenses.

Thanks for your prayers and support.

How are things going?????

They are going. That's about it really. We're in a holding pattern. Waiting for all the test results to come back. Hannah's really tired on the tegretol but they say that will go away as her system adjusts to the med. I sure hope so. She doesn't sleep. She just lays around and whines. Ugggh! She's goint through this screaming thing. She just hollors/screams/screeches out of the blue and it's the most unnerving thing I've ever experienced. I'm told that it's not uncommon among kids with autism to do this but I'm not sure what brought/brings it on. She sometimes screams out like that right before she has a seizure too so.....SIGH. Anyway, we just pray, wait and hope. Story of our lives.

We really need to make a move before the summer is up. Please help us pray about it. Hannah's health and safety depend on it as well as my sanity. David needs to be closer to us in cases of emergencies. We thought after July maybe this new seizure activity would get better but so far it hasn't. It's been nearly a year and we just had our fifth status episode. It's really a miracle Hannah's doing as well as she is. Kids just do not recover from such things as well as she has. Worries me to think that she could eventually not recover like she has. I mean how many can she take? I've lost my ability to not appear scared. I am scared. I'm terrified. I do not want to lose her and do not know how we'd live without her. I know people have it worse than we do and that people lose their kids too and why are we immune to that. We're not, but I do not want to lose my child and it terrifies me when I look at it as a reality I could face. I'm really afraid. Yeah, I'm strong. I'm strong because there is no other choice. Falling apart is not an option. Freaking out is not an option. Hannah's strong and she needs me to be strong.

I'm probably going to lose viewers because I'm being honest about how I really feel. When I'm honest people get uncomfortable and they gradually quit talking to me or asking about us. This really is a very lonely road and it sucks. I'm trying to be positive and I'm searching for the brightest ray of sunshine. Really I am. And there are so many things to be thankful for, but we can't get around the fact that things really suck and I'm very much having to work through being afraid right now.

Sorry to be a downer. Don't get me wrong. I would not trade Hannah for anything in this world. Not anything. She's an amazing little girl. As a mom though I hurt for her and sometimes I just have to vent about it.



This photo was Hannah recovering after seizures we were able to stop at home. Koolio stayed with her the whole time. After seizures the person is VERY tired and will sleep for a while usually. Depending on type and intensity.



Another of the recovery



I took these pictures the day of the last Status episode. It had been a really good day of us playing all day long. We had so much fun and no clue of how the day would end. :<(

Budget Saving Mom

Been working on budgeting. Check out this site....www.budgetsavingmom.blogspot.com Awesome instruction on savings. You can click on the button on this site to get there as well.

Boredom

O.K. So, I am now a parent of an child with autism who screams and screaches loudly and shrilly. I have heard others talk about it but Hannah was one who did not do it. I can't tell you how unnerving it is to hear her screech out shrilly out of the blue. The most unnerving thing is that it is exactly how her complex partials start so EVERY TIME she does it my heart jumps to my throat and I run to see if she is o.k. This is going to take years off my life y'all. Seriously, it is awful.

She's doing o.k. otherwise. Seems to be recovering and getting back to normal. She still looks awful. Especially her arms. I cannot get the tape residue off her arms so she looks dirty. SIGH! We backed off on her beginning dosages of tegratol so she is not as lathargic as she was. I'm still so nervous and hoping this med works. Someone told me earlier in the week that one of the EMT's told them that Hannah actually died at one point while they were trying to stabilize her. That just scares the crap out of me. I do not want to lose her. SIGH! I don't know what I'd do without her. Actually I seriously don't know if I could go on. I can't imagine losing her and it terrifies me to think I may.

She's been super bored today. She misses school so bad. I've played with her most of the day but she really misses her friends and teachers. It's hard to believe that there is not ESY here considering the requirements for the service. Hannah would qualify in a minute. Oh well, we do the best we can with what we have and I will try to treasure every moment I have regardless of whether I get anything else done or not.

Everyone else is doing o.k. The boys are doing their normal summer routine. Stay up and mess all night and sleep all day. Ugggh! David is working hard at Harwood.

Prayers please

Hannah's recovering. She's been super tired but doing better. I talked to the epileptologist personally over the phone yesterday evening and he believes Hannah's seizures are coming from her temporal lobe then generalizing to the whole brain and that it's worth us giving tegretol a try. We should have the PCDH-19 tests in a few weeks and will have better direction then. I have requested some training on how to help her better in an emergency. We do have versed to use now and I've practiced drawing it quite a bit so I think I can do it when the time comes to.

We need a miracle. We need several actually. Please keep us in your prayers. They are so appreciated.

We're home....

We came home yesterday evening around 7. Hannah was VERY happy to be home even if she was lethargic and groggy. She ate some chicken nuggets last night too so we were happy about that. David slept with her just so someone would be close to watch for any differences we needed to notice. He's such a good daddy.

I practiced drawing the versed last night. They sent me home with 3 vials and a handful of syringes. They also gave me a practice vial, syringe, and needle so that is what I did. I practiced and cried. I'm not sure why my anxiety level is up so much. I had David pray for me last night. I usually do so well and really hold it together. There was so much about this last hospitalization that was unsettling though and I think I'm just working through all of it. There have been so many levels to her illness and I just have to come to grip with each level and do what I have to do. I think that must be where I'm at. The epi told me that Hannah's seizures were coming from her frontal lobe(never been told that before) and that they generalize quickly. He told us that frontal lobe seizures are VERY difficult to control with medication. I asked if there was anything we could do to keep her from going status and that is when he told me about the versed. We also saw the geneticist who ordered a blood draw for the PCDH-19 mutation. That test is only done in one lab and it's at Harvard in Boston. It will go out tomorrow and we should know something in 3 to 6 weeks. If it comes back normal they are going to do a full metabolic work up. So, many things I can't even tell about them all.

Hannah woke up well this morning and seems to be rebounding. She is wobbly and her balance is off but she is ready to play with daddy so that is a sign.

We came home adding tegretol and orders to wean keppra. Also as an an added emergency med we have versed. So, currently we'e taking 4 seizures meds with orders to wean one and we have 3 emergency meds to use to try to stop seizures once they start.

I really appreciate all the prayers and support. You have no idea how much they mean to us. Please keep them coming.

unsettled

I'm sorry to just now be posting an update. I've really struggled this time because I feel like I should be upbeat and positive and I just haven't had it in me. This has been a nightmare pretty much to be honest.

It all started when Hillsboro EMT's sent David away from the care flight launch site telling him Hannah was stable and the careflight was 5 minutes away. So, we grab our things and head this way. Half way there I call Cook's to see if she was in ER or PICU and they didn't have her and had no clue that she was coming there. Which meant things had to have progressed beyond her being stable and she was in trouble. I called Hillsboro and they wouldn't tell me anything. So, needless to say I was freaking out because I had no idea where my baby was or how she was. We continued on to Cook's and found her in ER. She had just landed and someone hadn't radioed to tell them she was coming so that's why they had no information. We are then met by the careflight EMT's that explained the Hillsboro thing and what happened and that Hannah was in pretty rough shape. About that time I saw everyone talking around her room and saw someone look concerned and say, "they are removing the tubes!??!" I had just been told she was intubated for respiratory failure and every time before that happened we spent 24 to 48 hours in PICU before removal. So, I thought that was BAD and that we lost her. This whole time I was visibly upset and they kept trying to get me to sit down. That was the final straw and I lost it. Finally the ER doctor came out and kindly explained that Hannah was fighting the intubation and breathing well on her own so they decied to remove the tubes. They explained and apologized because they were trying to work what they normally do with what Hillsboro did.

We then came to the were admitted where we finally got seizures to stop around 2:00 a.m. They did an MRI yesterday and then hooked her up for a video EEG. The epileptologist came in and decided to take her off keppra and put her on tegratol. He also talked about a different rescue med for me to use. The geneticist came in and ordered a blood draw for the PCDH-19 mutation we needed. The only lab that does the test is at Harvard in Boston. Right now she is down having an x-ray. Her MRI showed she had a sinus infection and they are checking her lungs to make sure they are clear.

It looks like we'll go home on tegrtol, weaning keppra and on a new rescue med called "verus"(sp?) Please keep praying. WE know it's all that keeps us going.

The weekend....

We left on Friday night for Denison. The weekend really was a whirlwind and I couldn't have pulled it off without Mike and Christie. They are amazing and I'm so thankful for all they do for us. Koolio settled right in and was his charming self. There was a little kitten there and it was adorable. Koolio was scared to death of it. It was very comical. Here is this 80 pound dog scared of a one pound kitten. Poor Koolio.

Saturday was Hannah's birthday and she had a good time. She had a few instances of sensory overload but she really did have fun. There were quite a few kids there and she followed them around all day long once she got used to them. It was a wonderful day with family. Billie would have had a blast.

In the evening David and I went to the cemetary. I still can't believe she's gone. I just wanted to talk to her so bad and show her the adorable dress I bought for Hannah's birthday. Everyone says it gets easier but I just don't know if I believe that. I miss her so bad every single day.

On Sunday we visited Plano. Koolio went with us and it was wonderful. Jeff had prepared the ushers and greeters so they knew we were coming and ushered us right to a spot where Koolio could be safely. He did awesome. We were in the balcony and was a little nervous because he could hear things but couldnt' see what was going on so I let him stand up and look out and he was like, "cool" and went down and never got up again until we had him to. The balcony was a little disconcerting to Hannah. She had never sat above like that before but she did pretty good. The service was nice and I'm glad we were there to help them say goodbye to their old building. Afterwards we went to Fudruckers to eat with family and it was fun.

I was glad to get home Sunday but have had tons to do. Hannah is out of school and that is always a HUGE adjustment. She LOVES school and not having it is a nightmare. I'll have a couple weeks of fussing and meltdowns and then things should settle down. We can hope.

Anyway, the weekend was amazing and I'm so thankful for a great time with family. Hannah's well and stayed well. God still answers prayer.

Our weekend & Hannah's Birthday

Here are some pictures from our weekend. I'm a little bummed because there is not any of my brother and sister in law. They were awesome and helped me make this a wonderful time for Hannah.



Hannah at Fudruckers after church Sunday



Koolio in a down at church in Plano



Koolio chilling at Hannah's party



Uncle Joe & Baylee. David's uncle and my brother's daughter. Everyone's having hotdogs.



Mariah & Myla. This is my sister Rhonda's middle girls. All her girls are beauties!



Tristan. My sisters baby girl.



Makala. My sisters oldest girl.



cake



presents



singing Happy Birthday



Rhonda and Quay. My sister and her husband.



Sissy & Hannah. David's aunt and Hannah.



Nanny. My mom. It was her birthday too.



Aunt Sissy, Cousin Leeci & Aunt Shirley



Zachary & Koolio



Opening presents

Happy Birthday Hannah!

I'm two days late on writing this. I try to write to you every birthday and this weekend was just such a whirlwind of activity I never got time to sit down and let the words flow. So, today I'm going to tell you Happy Birthday momma style.

Happy 8th birthday Sweetheart. You're getting so big. Who'd ever believe you were once only a one pound seven ounce baby girl. I am so proud of you. You have strength beyond your years and your love for life is inspiring. More inspiring than anything is your ability to overcome every obstacle and do it with a smile. I know you can't enjoy your hospital and doctor visits but you seem to make the best of all of them and just deal with whatever comes your way. You are amazing.

I've had some hard moments this year as I've come face to face with the possibility that I could lose you. The thought of it paralyzes me with fear but it has also spurred me on to enjoy every single moment I have with you. You've taught me so much about life and my responsibility to make each day count. I've learned to celebrate small accomplishments and to never overlook the seemingly insignificant things because by overlooking them I miss so many opportunities to experience joy.

This year has been a year of attempts. You went everywhere this year with your class. You tried everything. You had a wonderful teacher who wasn't afraid to let you try things. You went to the zoo and field day with your regular ed class. You went to a pep rally and participated in water day. There were plays you got to see and assemblies you were able to go to. It was exciting to watch you work through all these things that are uncomfortable for you and enjoy them. You learned all your letters, colors, numbers, and how to match things this year. You can sing letter sound songs and also know a couple of site words. Those are just a few things you learned this year, all of which you were unable to do at the begginning of the school year. No, you're not up with your peers but we will not fret about what you do not know. We will celebrate with you what you do know.

You also fell in love with baby dolls this year. After years of not having anything to do with them, you finally have one favorite one that has to sleep with you every night. Your favorite toy is wooden bead mazes though. You can sit and play with them forever. SpongeBob is your favorite video character with Barney and Leap Frog running a close second. You're interested in everything and I mean EVERYTHING. Nothing is safe in this house from your little fingers. LOL!

Your daddy is your favorite man and that's the way it should be. He plays his football game in your bedroom floor anytime he has free time. You LOVE it and won't even let me in the room when the two of you are in there. You are so much like your daddy. You have his personality and actions. You love dads music and make him play it for you often. Your dad loves you so much and you adore him. Your next favorite guys are your brothers. They adore you and spoil you rotten. You aggrevate them mercilessly just like a little sister should.

Your hero passed away this year. I don't really know how much you understand and if you even realize that you'll never see your nanna again on this earth. Everytime you see a picture of her you put it to your forhead and say, "kisses". I know you miss her and my heart breaks for you because I know how much you loved her and she loved you. We all miss her but I think you probably miss her more than any of us.

You've had a lot of close calls this year healthwise. We still do not know exactly what is wrong with your brain and how to help but we're working on it. I am doing everything I can to make sure you have the best quality of life possible. It's a struggle for me but only because I love you so much and am afraid that one day I'll find out there was something I could have done but didn't do. You are such a huge part of my life and I'm so glad.

Because so many people care for you we were able to go to Ohio and get you a wonderful friend named Koolio. He's a beautiful Golden Retriever and he takes amazing care of you. He goes everywhere you go. He attends school with you, goes to the doctors and hospital with you. He does it all. Your life has been so much easier since he came into it and mom and dad have some peace of mind we've never had before. He sleeps with you every night in your bed. You love your bed by the way. I anticipated all this trouble getting you to sleep in it and you went right into it. You're amazing and Koolio is too. I look forward to him being a huge part of your future.

So, I'll end this note with a huge Happy Birthday! You're loved Angel girl and I hope you know it. We are so glad God trusted us with your care! Love you so much! Momma