Monday, July 27, 2009

These days...

These days we are spending our time waiting and playing. Waiting for doctor appointments, evaluation appointments, and any number of appointments. We are playing alot and enjoying every minute of it. Hannah is quite the entertainer. She wakes up in the morning talking with Koolio. We get dressed and I take her and him out for as long as they can tolerate it. We come in, eat breakfast and play school. She watches videos off and on and immitates the characters. Hannah likes to be held alot. She comes to wherever I'm at and says, "hold you". Translated that is "will you hold me?" I'll sit and bear hug her for a few minutes and we do that all through the day. She has decided my dishes in the sink need bubble baths. Water is splashed from can to can't but she's having so much fun it's hard for me to stop her. Yeah, my boys give me the same look you are probably giving as you read that. LOL! My shoes are always disappearing. Hannah LOVES shoes. She puts my flipflops on and wears them sideways. It's the cutest thing. She immitates all of us. We have to be so careful what we say or do because she does not forget and she will immitate whatever she sees and hears. Needless to say our days are very full and we are trying to enjoy all the good moments we have in betweeen the bad.

School is right around the corner. I'm exciting for Hannah yet nervous. She will be at the same school she was last year and the administrative staff and teachers there are amazing. They take really good care of Hannah. She will have a new teacher and with budget cuts there will be one less aide but I am confident that the administration will make any changes and additions should they be needed. They are just that great at making things work. I hope to get to meet with the new teacher soon. Hannah's rescue med has changed and she will now have to take one of her meds in the middle of the school day. She is having complex partials that are very unnerving and I just want to educate everyone so they can be prepared for the "worst" should it happen. At any rate Hannah is so ready for school to start back up. She's that much like her momma I guess. The kid LOVES school.

We are no closer really to having any answers about what is going on with Hannah and why she is having such severe seizures. I guess we are a little closer in that we've had genetic tests done and both came back normal so we're pretty sure it's not something genetic. Actually in reality her seizures are likely from her prematurity and all the things they had to use to keep her alive. We're having metabolic testing done on Oct. 1st and see the epileptologist again August 18th. As always I'm praying we do not experience anymore status seizures. I hate to say that I can handle the other seizures because I'd love not to have to handle any, but I can handle seizures, just not status seizures that can ultimately take our girls life.

I recently had Hannah put on the CLASS medicaid waiver list. It is a waiver that helps families like ours. However, that list is 8 to 12 years long. Can you imagine? Hannah could be 20 before she ever got the waiver and for sure 16 at the earliest. David says...."God is able"! I'm so thankful for his unwavering faith. Mine wavers so. Something I'm working on in my time with God. In addition to the medicaid waiver we have an evaluation with MHMR soon. I'm not sure what services they can offer Hannah but was told respite care is one and that I get to hire the respite worker. It'll be interesting to get the details. It's not alot of tiem but anything is better than what we have now. And I do feel bad about thinking about respite care but there are times when I need it severely.

I'll have to close here as I need to take Koolio to the vet. Thanks and please keep praying.

Friday, July 24, 2009


I just had to give Hannah a klonopin. She's been really cranky for days and I have had a hard time pinpointing the problem. Well, today I got a look in her mouth and she is cutting four teeth. Hannah has always had seizures when she cuts teeth. Please keep her in your prayers and hope with us that she doesn't go into status.

Wednesday, July 22, 2009

NO PCDH-19 mutation/deletion & dishwasher

NO PCDH-19 mutation/deletion found. We got the test results today. In a nutshell....we still do not know why Hannah's having the seizures she's having. Epileptologist has ordered a full metabolic work up and the geneticist scheduled it for Oct. 1st.

I videoed Hannah washing dishes but can't seem to get it to work on here. So here's a picture of her. She said she was giving them a bubble bath.

Saturday, July 18, 2009

Toys R Us

Kyle's girlfriend was down this week for a visit. On Wednesday before I took her home I dropped them by the mall in Arlington to spend the day. They were celebrating their "one year anniversary". Anyway, I remembered that when the boys were little and we went to the city the highlight of the trip was a trip to Toys R Us. I decided I'd do that with Hannah. We walked in the store and she said, "wow!" I walked her through every inch of the store to see her reaction to things. She did not get excited about a single thing she saw until we reached the dress up section where all the play jewelry is. O.K. so Hannah has tons of beaded jewelry already. She LOVES the stuff. I tried to interest her in other things but I didn't even get a smile. I gave in and we we chose two more sets of plastic beaded necklaces and bracelets. We also added a pair of snow white shoes, a magnadoodle, and a barbie for the bathtub. She has worn the shoes around the house all day long today. Her feet are gonna be sore tomorrow. She's also enjoyed the magnadoodle and we used the barbie in the bathtub tonight. All in all I guess our toys r us trip was successful.

Koolio didn't feel well one day this week. He keeps rubbing his rear in ant piles. Ugggh! We just can't seem to get rid of them! Luckily I have cream and spray on hand to treat any bites he may get. He's been doing really well and he and Hannah are bonding more and more everyday. She LOVES him. I love listening to her on the baby monitor talk to him after I put her and him to bed at night. She tells him he's a good boy and that he's sweet among tons of other random things. LOL! It's just so great to have him and I can't imagine life without him.

We're still awaiting information. I called the geneticist Thursday to see if the genetic test from Harvard was back yet but she was on vacation.

Thanks for all your prayers and support. I have to get off her and finish my cleaning!

Friday, July 17, 2009

One year ago today....

On this day one year ago we got on the roller coaster of a lifetime. Hannah's had seizures since she was 7 mths old and I had always been assured seizures were not life threatening; a person doesn't die from seizuers. I found out otherwise. Hannah had a 2 1/2 hour status epileptus seizure and we nearly lost her. After two hours in the Hillsboro hospital being stabilized, she was careflighted to Cook's in Fort Worth. She went straight to PICU and we were warned that she may not be able to talk or walk when she awoke and could need therapy to learn again. I cannot describe the fear that had gripped me. All I knew to do was pray and ask others to pray.

We weren't sure when Hannah would regain conscienceness and alot was riding on what happened when she did. Around 4 a.m. the first night we were there she awoke and began fighting the intubation. They decided to remove the tubes. I coulnd't watch it. David stayed. His strength never ceases to amaze me. As soon as the tubes were removed she opened her mouth and asked for her momma and her PJ's. No sweeter words were ever spoken I can assure you.

We spent a couple of days in PICU before moving to the epilepsy floor. From start to finish we were there 7 days. I watched as God amazed us continously through the ordeal. Everytime a concern came up I'd ask for prayer and everytime sometimes within hours our prayers were answered. The biggest one I remember was that Hannah couldn't walk right. She was walking but it was not good at all. The physical therapist came in and did an evaluation and ordered inpatient physical therapy. At that point I was afraid we'd never get out of the hospital. I asked for prayer and the next day another therapist came to do Hannah's therapy and Hannah just hopped up and walked normally. The therapist grabbed her chart and looked at it and said, "checking to see if I have the right little girl". She dismissed us that day and the doctors came in and let us go home.

As bad as all this was, it was amazing too. It was the starting point of a journey that is tremendously hard and laiden with fear at every step, but it has taught me so much about this life and the preciousness of it. I sat here this morning holding Hannah and thanking God that I can still hold her. This journey is not near over. We've had 5 more of those same ordeals played out in the past year not counting all the smaller episodes. At this point I feel like with everything I have learned about epilepsy I know nothing. The doctors are baffled. We're all trying to find out what is going on and want to fix it. Hannah's needs are great. I get down and my faith waivers. I cling to the scripture that says...." And we know that all things work together for good to them that love God, to them who are the called according to [his] purpose." Today I thank God that this is not the end of the journey and that the story hasn't had it's last chapter written. I thank Him for the hundreds of people who have come to care for Hannah and our family and who pray for us even when we can't pray for ourselves. Thank you. You mean the world to us and I hope you know it. We wouldn't have made it through this past year without you. Thanks from the bottom of my heart.


Thursday, July 16, 2009

Another day...

Other than a little tiredness, constipation,(side effects of meds that hopefully will subside) and screaming/screeching(still don't know what that's about. Afraid to even type what I'm thinking it may be.) Hannah seems to be doing well. We had that one day of complex partials last week and the epi raised one of her meds and so far so good. Since being off the keppra there is no more hours and hours of crying. We have our happy girl back. I'm so thankful. I was afraid we had lost her forever. We're still awaiting results from tests. Hannah sees the epi on the 18th of August and I'm praying everything is in for him to review by then. Especially the genetic test they did.

It's not looking like we'll be moving before school starts. I had hoped we would be able to but it's not in the cards it seems. About the time I think it's a possibility something sets it back. I'm trying to leave it in God's hands. Much better there than in mine. It's not like we hate Hillsboro or anything so staying won't be the end of the world. Hillsboro has cut back an aid in Hannah's class and the new teacher is a first year(altough I heard first year teacher are the best). The aid that handled Koolio was not brought back for this year so I'm not sure how it's all going to work out. I'm sure the new teacher will be fine. I just worry about the aids being less knowing the behavior issues that abound. Hannah's on a different rescue med as well as she'll have to take one of her meds at school in the middle of the day. Plus, we'd have to decide who will handle Koolio and train them because out of the two returning aids, one is scared of dogs, and the other would do fine on occassion but not as a constant handler. I'm not sure how the new teacher feels about dogs. At this point Koolio not being with Hannah is not an option so we'll have to figure it all out. I've never been let down by the staff in charge of making it all work though so I am trying to relax and just take a wait and see approach. My number one priority is that Hannah be safe and be able to learn.

I took her to the doctor the other day and it was such an ordeal. The doctor was fine but she ordered blood work and the lab was hideous. Hannah was a trooper. The lab tech was shaking so bad it was a miracle she could hold the needle. She even said at one point...."I've never seen an autisitic girl before". She didn't get any blood and I refused to let her try again. When we reported back to the doctor that they were unable to get any blood the doctor sent us back for a finger stick so we could get the needed results and called the lab and told them not to let that lady do the stick. Thankfully, Hannah took it all in stride. I really worry about the ability of Hillsboro hospital staff/EMT's to care for Hannah in an emergency. They work their tails off to stabilize her and I have no doubt they'd do everything in their power to help but they just aren't equipped. I can't help but wish we were just a short drive to the hospital that can help her best. I mean they have to stabilize her and then send her an hour away. What happens if they can't stabilize her enough to get her to the hospital? At least if we were closer an ambulance could run her to the hospital that can stabilize her. Again, God knows what he's doing and I have to let him work. And trust his work.

My faith waivers so often. I'm so hungry for inner peace. I want to feel the same assurance that a friend has who just found out her 35 yr old daughter has cancer. I read in awe as she talked about seeing God work in every detail and then proclaim that faith is indeed an adventure. How does one get to that point? Does it come with life experiences or is there something fundamental that I just keep missing?

Enough of my ramblings today. Please keep us in your prayers and thank you for all the encouragement and support.

Budget saving mom

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Friday, July 10, 2009

No more activity since Tuesday.....

Hannah went to doctor yesterday and had some blood work done requested by epi. It all came back normal so there doesn't seem to be an underlying reason for the activity we experienced on Tuesday. We're thankful that it didn't get worse than it was and didnt' require a careflight and overnight stay. The epi did increase one of her meds at night and left everything else the same. She's been fine the last three days.

Wednesday, July 8, 2009

Forget minimal bids

I'm dropping minimal bidding. If you're interested in something bid whatever. EXcept Sonata stems. I will keep those if I can't get the minimal bid.

Hannah had a decent night. Seems that because her new med causes dry mouth she has been drinking more and wetting more so her electolytes are low. It's always something. I'm just so thankful to God that these episodes did not involve careflights and hospital stays.

Tuesday, July 7, 2009

Having a Seizure Day

Please keep Hannah in your prayers. She's having a seizure day. So far we've kept them from being severe with klonopin but we're all on edge and scared. :<(