What ever happened to a free evening?

So....our lives are turning into a wild and crazy circus. I think that Thursday nights are our only evening where all of us are here togethor with no place to go.....although Keith won't be back until late tomorrow night so that counts this weeks family free night null and void :0).
It's ok when you just have to get kids to preschool/school/therapy during a week but now we've added dance class for the girls, Wednesday night church for Gid...Tuesday night therapy for me, and Wednesday nights I go to work on a quiet book I'm making for Christmas for Lucy with a seamstress who is generous enought to work with a not so great sew-person like me :0).
The therapy is an hour away....an hour there and an hour back....the sewing is from 700-1100pm. Crazy....anyway with Keith traveling a lot our lives seem fairly chaotic....and with the holiday season approaching I can't see much relief soon.
Lucy's appointment in Cincinnati went great. This doctor is the polar opposite to our one here. He is helpful, kind, asks questions, listens to our answers and wants to make sure we are satisfied with instructions and care before we leave. He explained several things to us that Dr Haseeb NEVER did...lik a siezure under 5 minutes doesn't cause brain damage...so we don't have to worry too much about those. Also....if a siezure does last more than 5 or if she gets several in one night...he gave us a suppository for Lucy to stop the seizures. It's $400 a syringe but since we have met our medical out of pocket this year...we're getting it free...along with Keith's vasectomy red0, Lucy's high tech more intense MRI scheduled, her 3 day hospital stay for Video EEG, all my therapy appointment and all of Lucy's and anything else medically that may come along in the next 2 months...WOO HOO!!
Anyway so we are feeling better about Lucy. We switched her medication. He was not happy that her personality was changing so much on the Keppra and that her siezures had returned on it. He stated that ...."we don't want her to live like that and we don't want you guys to have to live like that"....Finally a doc who hears us....so we are now on a new med....hopefully it will work and we can quit the Keppra and be done with this.
So that's what's happening....until next week :0)

Lucy

For all of you who are not on Facebook. Things with Lucy in the last few months have gotten difficult. Her therapists are concerned because one day she can do everything they want and more and the next she is totally spaced out and can't do anything. We spoke to her neurologist at the beginning of September about this and he wanted to up her medication and then schedule her for a Video EEG in December. I told him that we had already done this and seen no improvement but he wanted to try it again. So we up'd the meds and I was to check back with him in 6 weeks to see how she was doing and maybe up the time for the EEG. I called him last Wednesday and told them that where we had not seen much of the spacing out....we HAD seen a change in Lucy's behavior. She turned into a very irritable angry girl with numerous fits during the day where she is screaming and crying at the top of her lungs for 1/2- 1 hour at a time. They stated that those were just side-affects of the meds and that they didn't have an opening any sooner for the EEG. The next day Thursday...Lucy was again spaced out in therapy and couldn't complete her tasks and the next few days...we saw the spacing out occuring more often. On Saturday night Lucy had a siezure which hadn't happened since last February. On Monday morning I called her neurologist and told them what happened and again...as they had in February...they doubted my word that this was a siezure. They called me back at the end of the day and told me that the Doctor wanted us to up the med's again. I said..."we just up'd them and she had a siezure...doesn't he want to see her?"...the nurse responded with "well she has a video EEG scheduled for Dec 6th." Needless to say....I hung up the phone and decided I was done with that Doctor and I needed to get Lucy better care...to a physician who both remembered and cared about her case....to someone who wouldn't want Lucy's brain cells to burn for 8 more weeks....someone who cared if the medicine was really working or not....so I did some research and came across Cincinnati Childrens. They are a highly accredited hospital with a division of Ped's neurology at the cutting edge. THey have 15-20 Pediatric Neurology Physicians all specializing in different aspects of neurology. We have an appointment with them on Monday morning. We are seeing a Pediatric Neurologist specializing in Epilepsy. PRAISE GOD!!!! I feel like I can hope again!!! Please pray for us as we work on making arrangements for the kids..and that God gives us the wisdom we need....and the physicians an interest in Lucy's case and most of all pray for answers and healing!!! Thank you!!

It's been a Chaotic Life.....

What has happened to time? I feel like the entire summer flew by and now we're into October and I missed it!! So what has happened in our lives the last 3-4 months? TONS!!! Our summer started with a trip to PA and it ended with a trip to PA :-)....actually it was offically fall when I went to PA the second time....but it still felt like summer there...which was great..except that I in one day, drove from 70's to 40's.....Ella I got some weird looks in the Ohio service plaza's wearing a skirt and short sleeve shirt and Ella in a dress with no sleeves....Anyway it was a great trip....along with the trips we had in between. The trip to California was great too as well as the trip up north with Keith's family....
So what have we been up to since the end of August then?? Well, I totally lost the entire month to a horrendous thing called a Kidney Stone....yes and a big one at that...7 millimeters...had to have a surgury and stent...well the whole process and recovery was about 2 1/2 weeks long...I laid in bed for 2 1/2 weeks...let me tell you...there is only so much of watching tv and reading books I can do before I get a little crazy. Anyway it's over and I had one week to recoup before going out to see my great friend Traci and her new baby for a week in PA....it was suppose to be a 6 day trip ....it ended up being a 7 day trip because we had problems with the van...$600 dollars later and not a fixed vehicle made it a little more frustrating trip than I thought it was going to be...however....the company is working on a reimbursment for us after I reported to corporate about their corrupt store :0)....anyway it was a great trip seeing Traci and Jason and baby Colin....and as a bonus I got to see Grace and Susan and Dany too! Well...now life has returned to as normal as it's going to get for awhile...we are throwing a Golden Birthday for Keith's mom this weekend and the kids currently have Hand Foot and Mouth again so that may be a little tricky .....but we're trying to manage.
Gideon is loving 1st grade still....reading and amazing us more everyday with his learning skills...he reads Dr Suess books to the girls in the evenings...crazy...he's also playing soccer and in God's Club so he's a busy boy
Lucy is currently on a up'd dose of her med's because the neurlogist doesn't think the abnormal brain activity is gone...we are scheduled for a Video EEG in December....this is where we stay in the hospital with her for 3 days and she's hooked to an EEG machine and camera the whole time and we have a button to push when she has "seizure like" episodes...anyway hopefully it will give us the answers we need but in the mean time the medicine is making her into a crazy mean little girl and it's frustrating for me and Keith...our sweet little Lucy is not showing her face very much these days....She's in Preschool and LOVES her class...she also is taking dance class and can't wait to go every week.
Ella is talking a mile a minute and getting a little better with her stubborness but she's still awefully set in her ways and hormonal for a two year old. She is also taking dance class and looks so cute singing baby face and squeezing her cheeks together....
Hope everyone is doing well...Sorry for the long delay in posting.....