Sunday, October 31, 2010

My Goblins

I let the kids pick out their own costumes and we ended up with a vampire and a witch. Anna just had to have make-up like her sister so she ended up being quite a pale witch. Kenneth did Carly's make-up and I think he did an awesome job. Have I mentioned before how much I love that man? They went with Kenneth to the school carnival before I got home from work so they were already sugared up and looking rough before we headed to the Halloween Party at some friends' house. The kids had a blast at the party and we kept them up probably way too late. We didn't get home until a little before midnight and I do not think Carly has ever been up that late in her 6 years on this earth. Anna, of course, is no stranger to late nights. The party ended with a haunted hay ride and Carly couldn't stop taking about the guy on the train tracks with the chainsaw. I am not a huge fan of Halloween but I can remember doing those scary things as a child and how much fun they were and I want my kids to have those memories as well.

We did manage to get up and make it to church again today. I about had a nervous breakdown during the service. The sermon was about times when we are frightened. As I was listening I just really started thinking about how frightened I really am about all that is currently happening with Anna. I try to act pretty calm and cool about it but my insides are all a muck and I would be a liar if I did not say that I am scared. I know things will be OK. It isn't that. I know that God will use all of this for his will and that he will take care of us but sometimes the journey can be so hard. It is just so hard to watch this thing go on night after night and have zero control over it. Every time I wake up to check on her or to go the bathroom or whatever I just stare at her and within no time she will be seizing. I am not fool enough to believe this is only happening when I am watching. I'm sure it is going on all night long. Gee, what a comforting thought to go to sleep to! I am not looking forward to but at the same time totally looking forward to getting Anna's vEEG and MRI over with so maybe we can make some progress. I feel very alone because there are very few people in my life who have been where I am and understand how hard it is to watch your child go through this. I have a lot of people who are very sympathetic and as much as I appreciate those people and don't think I could make it without them it just isn't the same as having someone who has already traveled this road. The sermon today was helpful though as was talking and praying with the pastor. I know we will get through this and come out on top again. Into every life a little rain must fall but I feel like we are stuck in a storm...

Friday, October 29, 2010

Another Rough Night

Anna had 3 pretty bad seizures again last night. Luckily they were all after 3 am so at least we got a little sleep. The seizures seem to be worse each time she has one. I technically should have given the Diastat but I was too afraid. I try so hard to only be Anna's mom and never her nurse but the nurse in me kicked in. The Diastat was ordered for 10 mg which is what we give adults in the ICU where I work who are seizing. I was afraid maybe they had called in the wrong dose. At 27 lbs, I was afraid to give Anna an adult dose. I spoke with Dr Hernandez this morning by way of his nurse. He said the dose is fine for her and perhaps we are undermedicating our adults. He said to hold the Neurontin again over the weekend and try again on Monday. He thinks she is just sleeping so well finally that her brain is totally uninhibited and thus seizing worse. I trust him and so I will do what he says. Dear God, please let tonight be better... BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Thursday, October 28, 2010

A Better Night

I kept intending to take a nap yesterday but just never could. I was a ball of nerves and just could not relax. I did manage to get the house cleaned though and did some other things I had been putting off for quite some time (like the oil change that was due 20,000 miles ago). Kenneth got home earlier than planned from his trip so we actually got to spend some time together as a family last night which was nice. He is back at work today but I am glad we are at least in close proximity again. The secretary at the fire department was just recently diagnosed with stage 3 breast cancer. She is young and otherwise healthy so we are praying for a great outcome. To support her, the fire department changed their uniform shirts to pink shirts and they all shaved their heads. I can handle the pink shirt but it may take me a bit to get used to the bald head. I support what he is doing though! Last night was a much better night for us. I actually got 5 hours of uninterrupted sleep which was so nice. I did not see any seizures last night but I also slept in the living room part of the night because Kenneth was snoring. Tonight I will give the Neurontin again and see what happens. I am nervous but will do it anyway. I have to work tomorrow so I am hoping to get some sleep. I took a nap today just in case. I also finally cleaned out my half of our bedroom closet today. Kenneth has only been asking me to please do it for about 2 years now so he will be happy. I took 3 bags of stuff to Goodwill and it felt good to get it out of my house. Carly has been sweet and I think she knows I am tired and stressed. She said in the car last night on the way home from dinner that she really needed "a piece of quiet." I was working on some laundry tonight (which is usually Kenneth's job) and she told me that I really "just need to sit down and chill. Daddy can do that." Well the kids are ready to eat so I guess I should go finish dinner. Here's to a seizure free night...

Wednesday, October 27, 2010

Seizure Update

Anna woke up bright eyed this morning and you couldn't even tell she had a rough night. She was all excited to go to school because her class is carving a pumpkin today. So I went ahead and took her to school. I told her teacher about last night and to call if she has any further seizures. She usually does not have them during the day so I feel fairly confident she will be OK at school and have a good day. I called the neurologist's office and they got back to me pretty quickly. Dr. Hernandez does not think it was the Neurontin but rather just a coincidence. We are to hold the Neurontin tonight and see how she does. Then we are supposed to give it on Thursday night and see how it goes. If it happens again then it is the medicine. If it does not happen again then it is all coincidence. He did call her in some Diastat though that we are to give her if she has more than 2 seizures back to back or 1 seizure that lasts longer than 2 minutes. The Diastat is Valium in a rectal gel. I have had some people ask what her seizures are like. If I were smart I would video them for the doctor. Maybe I'll think of that next time. She starts with a chewing/smacking of her mouth, then she starts to breathe kind of heavy, then her right hand starts to twitch and her eyes start to flutter up and down, and then she commences to twitching all over. He did call these "cluster" seizures. I asked if one cluster would lead to more clusters and he said it is different in each kid. We will just have to wait and see. Before I couldn't sleep because Anna wouldn't sleep. Now I am afraid to sleep because I am afraid this will happen again and I might not be awake or wake up. Will I ever sleep again? Guess we'll wait and see on that one too...

Not The One

I put Anna to bed at her usual time, about 8:00. I climbed into bed about 9:30. I couldn't sleep so I was watching t.v. That's when the first seizure started. No big deal, I can handle one seizure. But then as soon as that one ended here came another, and another, and another, and by the time it was all over she had had 6 seizures back to back. I think this is called clustering but I am unsure since I am still new to this whole seizure thing. I do not think she will be getting any more Neurontin, it is clearly not the medicine for her. I will call the neurologist first thing in the morning. She is sleeping nicely now, post-ictal I suppose. I don't think I'll be sleeping much tonight.

Tuesday, October 26, 2010

1380 Calories

I was feeling all alone in my exhaustion today until I read a post by Jude's mom and then by Reagan's mom. Apparently not sleeping is going around! It isn't that I wish them to not sleep but somehow it is nice to know there are others going through the same thing. If you will recall, we had about 2 years of Anna not sleeping. Looking back I am not sure how Kenneth and I survived but I guess just like with anything else you do what you have to do at the time to get through it. We tried a myriad of drugs with Anna and finally found one that worked. She has been on that medicine, Trazodone, since that time. For the most part her sleeping has been much better. Then the seizures started and the sleeping took a turn for the worse. As her Tegretol dose went up it seemed she began to sleep better again. Over the past two weeks she has been up about every hour. All. Night. Long. I can barely take it under normal circumstances but being pregnant and then not sleeping is getting the best of me. I finally called the neurologist yesterday because I really think the not sleeping may be seizure related. Her marathon EEG isn't for about 3 weeks but if we continue this pattern for another 3 weeks I may become homicidal. Kenneth is out of town this week so I am flying a solo mission and wearing out quickly. Anyway, she was started on another medicine yesterday in addition to her Trazodone and Tegretol. She is now also getting Neurontin at night. She did a little better last night so I hope it is a sign of things to come. Sunday night was the last night Kenneth was going to be home for a few nights so I took an Ambien so I could get a good night's sleep before he left. He agreed to get up with Anna that night. And boy did I sleep. Guess what else I did? I sleep walked into the kitchen and got an unopened bag of powdered sugar donuts and took them to my bed where I commenced to eating the whole bag all while sleeping. I only knew what had happened because I woke up Monday morning covered in powdered sugar, empty donut bag on the floor next to the bed, and the worst stomach ache I've had in years. I guess that will be the last ever Ambien for me. After I got over the shock I read the nutrition label to see just what I had consumed. OMG! I ate 1380 calories and 180 grams of carbs! I hope the massive diarrhea that followed that morning kept me from absorbing all the calories! On the way to take Anna to school this morning I had a semi freak out and began wondering just what I am doing having another child when I am almost already too exhausted to take care of the two I already have. Then the thought occurred that it is too late to think that. I just panic when I think what if Anna's sleeping never gets better and I am up every hour with her and then right as she falls back asleep the baby wakes up. I allowed panic to set in for only a few minutes and then I remembered that God is in control. He planned this pregnancy and this little one's life as well as my life and he will work it all out. In Christ alone I place my trust.

Sunday, October 24, 2010

Amazing Grace

Carly's 1st Grade School Picture

Today was the first time we have been to church since Anna started having seizures. It isn't that we didn't need church because we needed it just as much as ever but the seizures presented a new problem. During Sunday School and church children are supposed to be with the children. It isn't that someone would freak out if Anna came to the worship service but I know I could not keep her quiet and I would be so preoccupied with keeping her quiet that I would likely get nothing out of the sermon. I know that God would honor our presence anyway but it just seemed like an impossible task. I just could not get comfortable with dropping Anna off to a a Sunday school teacher and then different volunteer each week who watches the kids during church and saying,"This is Anna. She is sweet and cute but she has seizures. Oh, and she is really difficult to understand. Good luck. See you after church." I have really wrestled with what the right thing is to do. Was it to be the volunteer most weeks and watch the kids myself? Well, then I still miss church and some Sundays I have to work. I had finally just kind of resigned myself to the fact that church just wasn't doable for us right now. Then at the visitation for my great grandmother Carly says to me,"Mom, you never take me to church anymore and I want to go to church." I turned to look out the door because I knew my mother of the year award would be delivered at any moment after that. I did some thinking and decided that we really had to get back to church because I don't want Anna's problems to become Carly's limitations. I want my children to grow up in church and knowing the Lord. So off we went today. Anna had been promoted to a new class since we last attended. I spoke to the ladies in the nursery and was able to get a pager from them and then dropped Anna off in the 2-3 year old's class. I let the teacher know that we had a pager and that if she needed us to let the nursery know and they would page us. When I explained that Anna has seizures, the teacher's eyes got as big as half dollars but she smiled and took on the responsibility. I know I drop her off at daycare eveyday but it is different. They are paid and they had a choice whether or not to accept Anna and all of her problems. We have also taught them what to do if a seizure occurs. They are all also CPR certified. At church, they are all volunteers who did not sign on to take care of my spoecial needs kid. Anyway, I left once during church to go check on Anna (more so to check on the teacher) and all was fine. I actually shed a few tears during the service because I was so happy to be back (well, and because I am pregnant) but mostly because it felt so good to be back. God had it all under control, again, just as he always does and I hope to someday learn that lesson so well that I no longer doubt. Fear is the one thing the devil really uses to deter me from the path I should be on and I have got to quit letting fear get in my way. The sermon was about when we face our greatest struggles. One of the things we discussed was forgivness. I just kept thinking about how good it feels to be free of the anger about Anna and to have been able to forgive. I feel like I am no longer in chains. I was thinking back to how I felt imprisoned by anger earlier this year and how horrible life would be if I was still living in that anger rather than bearing fruit again. My fruit buds are still immature but they are growing rather than withering away and for that I am so thankful...

P.S. I have been getting a lot of hits on this blog with people looking for "Peptamen Jr 1.5." I still have 3 unopened unexpired cases of this tube feeding that I will happily donate to anyone who needs it if you will just pay for shipping. I also have an unopened case of 500ml Zevex Infinity Bags that I will donate just for the cost of shipping. If you are interested in either one please just either email me through my profile or leave a comment. I really hate for this stuff to just expire sitting in the floor of my pantry, it is way to expensive for that!

Saturday, October 23, 2010

In Memory

Ethel Scivally

We buried my great grandmother this morning. Her death was not something to mourn. She lived 97 years and up until the last year or two she lived independently in her own home. I feel so blessed to have known her, loved her, and had her in my life for 33 years, I do not know too many people who at 33 years old still have a great grandmother, let alone 2. Although "Mother Scivally" (as she was known) is gone, I still have one more great grandmother alive who is also still living independently in her own home. Mother has left behind such a legacy! She was what a grandmother should be and although she will be missed my heart smiles to know that she is in heaven with her husband, son, grandson, and many others who departed before her. She married just prior to the Great Depression and she knew what it meant to struggle and sacrifice. She raised 4 successful sons and endured the death of an infant son. She was a farmer and rancher all her life and it was nothing to see her at 90 years old out in the pasture working cattle. She loved to play jokes, play in the creek, fish, and garden but ablove all she loved the Lord. The only difficult thing about her death has been watching my grandfather who is in ill health himself cry and look like a little boy because I guess no matter how old you get it is never easy to lose your mother. One of my great grandmother's son's, Uncle Don, wrote a lovely poem about her as he watched her deteriorate over the past year. I think it is such a fitting tribute.

Today I sat be mother's bedside
She is so frail and weak
It seems like only yesterday
That her life was at its peak.

We would work in the field together
My brothers, mother, dad, and me
The time we worked together
Was how life was supposed to be.

Mom would work until eleven
Her time was stretched so thin
She would prepare a meal for hungry boys
Then yell a piercing scream to call the family in.

Married just before the depression
Mom and Dad struggled to get ahead
Their tales of working sun to sun
Just to keep the family fed.

There was fierce determination
A better life to provide
And the fact of her success
I now look back on with pride.

Life was more than work
She knew how to have some fun
From playing in the creek with kids
And showing how snowball fights were done.

Through the years of joy and heartache
She has lived a Godly life
And she serves as a good example
Of mother, friend, and wife.

Memories are our vessel
To turn back the hands of time
As I remember my childhood
When she was in her prime.

Now I'm looking forward
To a home almost complete
When life here is finished
And we stand at Jesus' feet.

In my mind to see the family
Complete as it used to be
Health problems all behind us
For God has set us free.

Yes, today there is a sadness
And a teardrop in my eye
As I watch mother's failing body
Her little boy will cry.

But there's victory in the morning
And the sun will always shine
As I hear the Master calling to the family
"Children, come and dine."

Don Scivally

Tuesday, October 19, 2010

Patching and Testing

Today was Anna's opthamology appointment. The one thing I really did not want to do was patch Anna's eye. Guess what we are doing? Yep, patching Anna's eye. It isn't near as bad as I expected though. It is only for 90 minutes a day everyday for 2 months. We go back at the end of the 2 months and if it is better then awesome, problem solved. If not then she will need eye surgery to fix the problem. I am betting on the patches working for many reasons. Number 1, I do not want her to have to have surgery. Number 2, 2 months down the road and then needing surgery would put us into January when our deductibles and out of pocket for our insurance start over and I would love to say the money doesn't matter but sometimes it is hard to come up with it so in that respect it does matter. We always seem to find a way to make it work but it is difficult. This year we have already met our total out of pocket with Anna so everything except copay is covered at 100% right now. (This is good news since she has the upcoming inpatient stay for the EEG and MRI.) Number 3, the thought of eye surgery makes me quite queasy and I am not sure I could care for her eye. ( I realize how selfish this sounds and probably is but it is the honest truth.) So I am praying the patches work! I put the first one on (well actually it took Carly and I both to hold her down) and she screamed and cried for about 10-15 minutes saying "NO, not like it!" but after that she was over it and is tolerating it just fine now. They said if the child sees the parent is not going to give in they usually just deal with it. They were right.

Now on to the next matter. If you have done any reading of this blog you quickly realize nothing is ever "normal" for us. Kenneth has severe dyslexia. When we married he could barely read and his spelling was and still is atrocious. He did a lot of tutoring after we married and his reading skills are so much better! When a parent has dyslexia, their child has a 50% chance of having it as well. It appears Carly may be the lucky one. I have been concerned for awhile but have just tried to assume it is due to her age and it will get better. It isn't getting better and in fact it is getting worse. She is super intelligent kid and anyone who meets her and can tell right off the bat. But her schoolwork is a whole different story. She confuses B,D,and P. She confuses M and W. She writes about 50% of her letters and numbers backwards. She is falling below the state accepted standard in reading comprehension and failing her spelling tests. She cannot remember the difference between front and back, up and down, and so on. She is already in tutoring after school Monday through Thursday to try to help her. I could go on and on. I spoke with her teacher about it and she assured me this is just all normal 1st grade stuff but I just don't buy it. Then the next day Carly came home from school all upset because her teacher, in front of the class, said "Why can't you just quit doing everything backwards?" (Don't even get me started on this.) I swore I was not going to be "one of those parents" but it appears I am. The school offers a "screening" test but it is the parent's responsibility to have formal testing done and the school district will not provide any further help for her until she has an official diagnosis. I called and spoke with Dr. Elliott who is the counselor we took Carly to about her anxiety and spoke with her about it. I explained to her what was going on and she said Carly absolutely needs to be tested. She said the earlier we catch it and get her started in a program, the better she will do in school and life from here on out. But guess what, insurance does not consider dyslexia a medical problem so they do not pay for testing. So it will be somewhere between $700-900 out of pocket for that. We have to do it though. It will pay for itself over and over if it helps her to succeed in school and life and helps with her self esteem also. She gets so frustrated. We will spend an hour doing spelling words and she will have them that night but then the next morning they are gone again...and there are only 12 of them. I do not want her to begin to think she is dumb. We should be getting a call in the next week to get the testing set up. Maybe I'll win the lottery sometime between now and then...

Monday, October 11, 2010

I Want To Be Where She Is

Anna has become quite a fan of food. She wants to eat as soon as she gets up in the morning, right before she goes to bed at night and pretty much all the time in between. It is so crazy to think there was a time not too long ago that she wouldn't eat. It is just crazy how things can change. I've been having a rough week emotionally this week. I do not know if it is hormones or just the ebb and flow of grief. I have shed tears on most days again and that is something I had not done in awhile. I think about Anna's upcoming hospital stay and another round of general anesthesia for her MRI ( I think this is her 6th or 7th time to be under general anesthesia and she is not even 3), her eye appointment and likely needing glasses or a patch or eye surgery, her worsening gait and probable need for orthotics, her continued seizures, her upcoming speech evaluation where they will tell me how behind she is... I just get overwhelmed sometimes. And I know, I know there are people who would give anything to be in our shoes, to have a kid who walks and talks, but it is still so hard sometimes. Sometimes it just comes out of nowhere and hits me like it is all new again. This has been one of those weeks. But then Anna walks in the room. She is smiling and laughing and she just changes everything. It is then that I realize that I am the one with the problem, not her. She is fine just like she is. She doesn't care that she talks funny, walks funny, has a lazy eye and some seizures. She is just happy to be 2 and alive and doing everything she can do. I wish I could see her life through her eyes so that I wouldn't be tempted to worry about how cruel the world can be and worry about how people will accept her as she gets older. She doesn't care about this terrible palsy and I so wish I could be there too...

Thursday, October 7, 2010

Emily's Smile Boxes

There is a little girl (growing quickly might I add) named Emily. Her baby brother Jude had a stroke prior to birth. He has cerebral palsy and that is how I initally learned of this family. Emily wanted to make a difference in the lives of hospitalized children and their siblings so she started a non profit called Emily's Smile Boxes. She makes boxes full of crayons, coloring books, puzzles, etc. and sends them to kids in the hospital and their siblings. She has won many awards and is just really a fascinating little lady who is wise beyond her years. She is in need of more funding. I really don't promote many charities but I really feel like this is one worth supporting. I have no idea who all of my readers are (although I would love to know so drop a line and introduce yourselves) but I am hoping some of you are the generous kind. If so, please please please consider a donation to Emily's Smile Boxes.

Tuesday, October 5, 2010


Anna had another seizure last night. I called and reported it to the neurologist and now she will have to spend at least 48 hours in the EMU (Epilepsy Monitoring Unit) at Cook's. I am waiting for the scheduler to call me and set it and her MRI up. I am not excited about this but am excited about maybe being able to get her seizures under control. An update to my story yesterday is that everything has stayed in position but because I let the problem go on for so long I have damaged my bladder. It will hopefully repair itself over the next couple of weeks. So if you are pregnant and can't pee, don't wait like I did. Call your doctor and get it taken care of. Carly just got home from school and is in trouble for lying, again. I am about to pull my hair out. She is such a good kid, good student, sweet, and loving and I do not understand why she has to lie. I feel like it is something I am doing wrong, but I am doing the best parenting I know how to do and sometimes it feels like it just isn't enough. Sometimes I think I have over spoiled her to make up for the rough times with Anna. I don't know, somebody help me...

Monday, October 4, 2010

Why I Suck At Being Pregnant Part II

TMI so only read further if you really want to know... I have been having increasing difficulty urinating, almost to the point of needing to go have a catheter placed. I have tried to just deal with it but a full bladder that you cannot empty can get pretty painful. So I went to see my OB this morning and I have something called an incarcerated uterus. Basically my uterus is retroverted which is usually no big deal because it is that way in about 30% of women. During pregnancy as the uterus grows up and into the abdomen it usually flips into the right position. Instead of flipping, mine is caught on my pelvic bone and not moving up. It is still getting bigger though so it is blocking my ureters and thus I cannot urinate. He manually repositioned my uterus in the office this morning. Um, yeah, not fun. Not fun then and for sure not fun right now as I am still cramping like a mad woman. If it stays where he positioned it then great. If not, it will have to be fixed under anesthesia. I am praying every time I walk to the bathroom that I can pee, I do not want to be back in the hospital until it is time for delivery. Geez, can't I do anything normal?

Friday, October 1, 2010


  • The 24 hour stomach virus that everyone else in Anna's class had was a 4 day virus for Anna. She is finally well. She had a pretty nasty seizure during the night Tuesday night/Wednesday morning. I called the neurologist's office but they said that since she is sick the seizure doesn't really count. I was happy to hear that! No medication changes and no EMU! The only problem is that since she was sick she no longer wants to sleep. She is usually asleep between 7:30-8pm but now she is not going to sleep until more like 10pm. She also has not napped at school the past 2 days which is totally unlike her. (So sorry Ms. Jennifer!)I am wondering if her tegretol level got low during all of the diarrhea. The tegretol has helped a lot with her sleep and it is obvious something has changed because that girl just isn't sleeping.
  • I am not usually one to do much to my hair. It is so coarse and dry that I am afraid to apply to much chemical or heat to it. I decided to go against my usual though and had something done to it called a "Brazillian Blow Out." I am so glad I did it. If you have curly frizzy unruly hair this is the answer. It lasts about 3 months and I am pretty sure I will have it repeated after that. It has made my hair soft and smooth and nearly frizz free. It used to take me almost 2 hours to blow dry and flat iron my hair (which is why I rarely did it) but now I can do both in about 20 minutes. It was an amazing hair transformation!
  • I do not care all that much about football and am not all that interested in the Texas vs OU game this weekend but I will tell you what is on my nerves...all the stupid traffic that is making it impossible for me to get to town. Grrrr
  • Carly attended a "mini cheer camp" after school this week. I am not a huge fan of cheerleading but if I try to steer her away from it I am afraid I will steer her directly to it so I just go along with it since it is only 1st grade. She will be cheering and doing a dance at half time at the high school football game tonight. She is so excited. I wish Kenneth was home so he could go too.
  • My 27 lb Anna is too tall for the 3T jeans we have for her. Anybody ever try to find jeans in a 4T for a 27 lb kid? Don't bother, you won't find them. She is all legs. Certainly she takes after her daddy because Lord knows that isn't my build!
  • That is all.