another update

Such a busy time of year. School will be out tomorrow. Kyle has been out for a few weeks now. He'll be going this weekend to say bye to his girlfriend who leaves for basic training with the army on June 2nd. We'll be heading to Sherman where we'll visit my brother and have Hannah's 8th birthday celebration. Then on Sunday we'll attend Abundant Life's last service in their old building. They will move services to their new location next weekend. So many exciting things happening. I can't wait.

Hannah has really had us excited lately. She is talking alot more and it's appropriate conversation. Answering questions, asking questions, etc. It's been exciting to have this window open and we are trying to enjoy it. We never know when it will shut nor when it might open again. Hopefully the windows open much more often for much long periods of time. All you with kids who have autism know what I'm talking about. She's participated in several end of school activities and I've been super pleased with the results of our attempts. She did field day and that went well. Yesterday was awards at the junior high and she did awesome. Today they had water day and I really didn't think she'd participate at all. Her teachers tell me she did it all. They had huge water slides and she did them. She did the slip and slides too and then enjoyed some time in a wading pool outside her classroom with her teachers and classmates. I nearly cried when they told me how it went. She still has alot of meltdowns but I really believe once we can take her off keppra those will go back to nearly nonexistent. They were before keppra. We have at least a couple more months on it though. The epi won't change anything until he gets all her test results back. And the bulk of them won't even be done until July 15th. Then she has the child study center testing to go through too. So much to do. She is still taking singulair and we're hoping it helps with all this respiratory stuff she keeps getting. EVERYONE tells me their kids did so much better after going on it so lets hope.

We are still looking to move to Arlington. We're kind of stuck on getting anything settled Hannah wise until we find a house. So, that is where we are. We're looking for a house and will get more serious about it now that school is out.

Zachary is doing great. I know I rarely say anything about him but he's just consistantly Zachary. He loves being home and just does his thing. He does super well in school and is looking forward to moving somewhere where he'll hopefully not be required to take Spanish 3. LOL!

I'm going to create a school room in Hannah's room for her birthday. She will lov eit and her birthday is comign up. So, if any of you have school related things you are going to chunk, don't. We'll take them. Any supplies, flashcards, wall posters, etc. I'm excited. A couple of friends already have said they have things to contribute. Yipee! Oh, and speaking of friends could y'all say a prayer for a friend of mine. Her name is Rachael and she has a tumor that has been mysterious and evasive. She can't help but worry about it and I can't help but worry for her. She is having some follow up testing in July. Please keep her and her family in your prayers. She's an amazing lady and was very instrumental in us getting Koolio. Thanks.

Update

Life has been CRAZY busy. I sure hope there is a relaxing moment around the corner.

Hannah's birthday is just around the corner. She'll be 8 on May 30th. It'll be tough for all of us in that it'll be our first birthday celebration without Billie. She LOVED birthdays. Still, we'll try to focus on what we have and not what we don't. We have Hannah. We very easily could not have. I think the biggest lesson I learned since last July 17th is to never take a single day for granted. We came so close to losing her many times. So, please pray she stays well so we can party! We are going to celebrate this amazing miracle of a girl that we are so privileged to have in our life.

We have a couple more months to wait for answers. On July 15th Hannah will go in for an MRI. After the MRI she will move to the epilepsy monitoring unit for another 24 video EEG and then the metabolic geneticist will come in to see her while we're there and order the testing she needs to be done. It will be a full couple days. I'm sad that we have to wait longer but what's two more months when we've waited 8 years?

There is a brand new gene mutation/deletion just discovered that the geneticist is going to test Hannah for. It is PCDH-19. They've found this gene in girls who were clincial for DRAVET but did not have the SCN1A deletion/mutation.(which Hannah did not) It's still very rare. Maybe more rare than even DRAVET but the prognosis is a little better than DRAVET too. I've read the research and agree that Hannah should be tested for this. So, that is something they will test for in July among some other more common things that they'd just like to rule out.

We're still looking at a move this summer. We really need to move to stay sane. The boys still need a mother too and with David an hour away it makes things hard. It would help for him to be closer to us and for me to be closer to the things Hannah needs. Please help us pray things will open up for us to make a smooth, affordable, and low stress transition. I will miss everyone here but I'm going insane trying to figure out how to get Hannah to everything she needs and be there for the guys and take care of our home, bills, etc.

Thanks for your continued prayers and support.

Field Day...

I loved this picture. The kids in Mrs. Skelton's class have been so sweet to Hannah this year.


Mrs. Mobley helping Hannah participate


Mrs. Mobley and Hannah


Hannah's favorite activity


waiting in line

Koolio LOVES peanut butter

David gave Koolio our empty peanut butter jar....

Life is a box of chocolates....NOT!

Sorry for the lack of blogging. I know so many of you are so faithful to read and pray for us. I've just been in funk lately. Uggggh!

Hannah's been sick for two weeks. Last week it was stomach flu stuff and this week it's respiratory stuff. It gets so tiring and I would give anything for just one day where we were not pouring drugs down her throat so she can live through the day. Of course you'd never know she was going through hell because she is just the happiest child alive. Amazing.

We've been doing the testing Dr. Malik ordered and yesterday we spoke with the geneticist. It was discouraing in that the tests she needs to order our insurance will not cover. The only way the insurance will cover them is if she is admitted so we may end up with another observation stay just so we can get the testing done. CRAZY and FRUSTRATING. Anyway, there is a new gene mutation just discovered in girls who present clinical for DRAVET syndrome. The mutation is only found in girls and she feels like it would be a good idea to test Hannah for it. I just want them to find out what is wrong so we have some direction. I'm tired of shooting in the dark where she is concerned.

The 30th of this month is her birthday. She'll turn 8 years old. I'm already praying that she is well because I'd so like to celebrate it. One thing I've learned this year is that I cannot take a day for granted where she is concerned. It is a miracle we have her with us and her life is something to celebrate. So, please pray she stays well.

God has been good to us and I do not want to sound as if I am ungrateful or unthankful for what we have. Hannah's life blesses us everyday. Koolio remains the awesome dog. He's a dog but he's amazing. He keeps us laughing and he watches his girl and is there when she needs him. I can tell you though that even a well trained dog is still a dog. LOL! He's a mess!

Love to all of you! Please keep praying!

So much happening....

Hannah's got a cold and didn't go to school yesterday because of a low grade fever. This is the third time in less than two weeks she's been sick. Please keep her in your prayers.

The Hill County Reporter did a really great story on Hannah and Koolio and the GA's last week. I'll get David to scan it so I can post it here. They got nearly a whole half page. It was amazing and very kind of them to put out and really just a good story.

We are supposed to see the metabolic geneticist tomorrow. I should get a call today to go over Hannah's history, etc. Next week is an MRI and then we'll go back to Dr. Malik for the results and changes that need to be made.

I'm sorry I'm not posting alot on here right now. There is just alot going on. We've had prom two weekends in a row. Hannah's off and on illnesses and ongoing seizures. It's just been a hard year. Especially since July of last year. Billie's loss is so hard everyday. Sunday was horrible for us. I woke up thinking about her and hoping heaven had yellow corsages and puzzle books. Saturday was hard because I always went shopping for Mother's day and hit Barnes and Noble to get her some books. I couldn't even go in to look for myself. We miss her so bad.

Could use a small digital t.v. or computer monitor

We were given a digital video monitor to use at night so we can see Hannah and Koolio if we hear something instead of getting up and checking on them every noise we hear but we only have one digital tv and no computer monitors with hookups. If anyone has one they are selling or getting rid of please give us a hollor. We've been using a webcam someone gave us but it doens't have night vision so we can't see much and a regular baby monitor for sound. This new monitor is amazing and perfect to help us get a little more rest.

Hannah's sick again

I had to pick Hannah up from school due to vommitting. I took her straight to Dr. Beyer and they gave her a phenegran shot. She's had klonopin too. Please pray it doesn't get more serious than this.

Frustrated

I can't believe that we just get home from a 24 hour video EEg where Hannah had absolutely no episodes and she has one. She had a seizure tonight. It wasn't one of the worst ones she's had but still....she started seizing, came out of it, started throwing up. Her doctor had me give her a phenegran and a klonopin. Luckily no more episodes the rest of the night and she's doing o.k. now. The poor girl pulled a huge hunk of hair out of her head when she was seizing this time. :<( I'm so struggling with keeping my spirits up.

took this picture at 2 a.m.