Another seizure...

STUPID ALPERS!!! I wish I could beat it up!

On Monday at 3:00 am I woke up to Averie having a seizure. She was sleeping with me in bed and it sounded like she was really congested or something. In my sleepy daze I tried to get her to cough up the gunk, but then I felt by her mouth and all I got was handful of wet stuff. I thought "bloody nose!" and turned on the light...that's when it was very clear that it wasn't blood, but saliva bubbling out of her mouth. I tried waking her with no response. I jumped up and yelled for my mom to call 911 because it was clear Averie was having a seizure ( it took a minute to get them to realize what was going on and I almost broke the phone trying to get it to dial...i was shaking SOOOO badly! ). I immediately got the rescue diastat and while my mom was on with  the dispatcher I gave Averie her first dose. Dad helped me get her downstairs to the couch where we watched her carefully. The seizure was tapering of ever so slightly so I gave her the 2nd dose of diastat. Almost instantly her body relaxed and she appeared to just be sleeping. Minutes later the EMTs were there and taking vitals. They said everything looked alright, but I warned them that most likely she would start to seize again. The decision was made to take her straight to Emanuel Hospital. I rode in the ambulance with her and at one point the EMT asked me to describe what seizure activity looks like. It ended up that she may have had a little seizure in the ambulance, but apparently it stopped on its own. He had me move to the back to sit by her so that I could point out any other seizure activity, but the whole rest of the trip she remained seizure free. When we got to the ER they got an IV going and gave her some meds to keep her tummy calm. She still hadn't had another seizure so after about an hour in ER we were moved up the pediatric unit. Averie slept most of the morning and only woke for little drinks now and then. Finally in the early afternoon she woke up more fully and proceeded to eat a chocolate chip cookie, a whole dish of mac n' cheese and drank a ton of chocolate milk. After talking with the neurologist and watching her closely they said that we would be able to go home! It was the general consensus that her daily meds needed to be increased , but that she was almost near where she needed to be since she only had the one seizure and  that it was easily stopped with the diastat. This is very similar to 2008 after she was first diagnosed, when it took several medicine adjustments to get her seizures under control.

Hopefully with these adjustments we can look forward to another year or two without seizures. Most likely we will be having to make adjustments all along the way as she continues to grow taller and gain weight. I will happily deal with this if we can keep her at her baseline. I just really hope she will not have any more seizures during the night. I am seriously considering setting up a video monitor in her room to watch for activity. If I don't do something I might never sleep well again!

Big Scare!

Well as some of you already know Averie had another seizure last week. It was completely out of the blue and totally unexpected. I was over in Idaho preparing for our move and Averie had stayed with my mom so she could do a review week of school. Bright and early in the morning I got a call from my sister saying Averie was in the midst of a seizure. Intially I felt completely helpless because I wasn't there, but I also knew my mom would know exactly what to do. She had immiedately called the amulance and after confermation from me she administered a rescue seizure med- a diastat of rectal Valium. It worked almost instantly and just as the paramedics arrived. Her heart rate and breathing remained good, but another dose of the valium was administered just before the parmedicas left. En route she was was given IV fluids ( pretty gross, but they drilled into her shin bone and put the fluids right into her bone marrow ) as instructed by her emergency form. She made it all the way to the hospital where she then vomited and started to seize again. The doctors chose to give her Ativan and intubate her when her CO2 levels got higher than normal. After a couple hours she was transported in to Emanuel Hospital in Portland, OR.
The doctors told us it would probably take several days for her to wake up from all the meds she was given. She had recieved enough Ativan to knock out a football player for a day. To my surprise when I got to the hospital that night she had already been extubated and was waking up! She is so incredibly strong! Although it seems the seizures are the easy part because from from the time she woke up at 12 am she ended up staying awake untill 3 pm the that day. She also seemed to have double vision and even though she wanted to be up moving around her body was like a limp noodle and wouldn't cooperate. Add in her IV and all the wires for her heart monitors she was a very cranky and agitated little girl. Every so oftern she would yell, " NURSE!! NURSE!!" fully expecting them to come running. If they did happen to come in she would say, "What are you going to do to me now?" I really couldn't help but laugh even though I was extermely exhausted myself.
The next days proved to be better, as each day she became stronger and more coordinated. She was able to walk to the bathroom with a steady hand to guide her and lots of patience. The doctors were very impressed with how well she was doing and allowed us to finish her recovery at home. They know I am confident in caring for Averie after a seizure of this size.
I am so happy she is doing well, but the big question is Why Did She Have A Seizure? She hasn't had this sort of seizure since 2008! Normally there would have been warning signs like a headache or vomiting. Neither of these happened. She was just sitting in a chair reading when she became frozen and unresponsive. This scares me more than the ones where she shows signs because it means this can happen anywhere and anytime, including school. Its definitely adds another level of worry to the whole enrolling her in school situation thats for sure! I really think this seizure happened because she needed an increase in meds , but you never know. I need to schedule a follow up EEG to really know what is going on. I pray the higher dose of meds will do their job and Averie can continue to live a "normal" life. So the process to enroll her in school starts tomorrow..and I pray that I will be strong enough to put my faith in other people to care for her for a couple hourse a day.

Big Changes!

Averie's life is about to change big time!

We are getting ready for our final week living with my parents and preparing to move into our own apartment! Averie is super excited and has already picked out her new room. I can't wait not to share a room with her and she excited to get out all her toys that have been packed for the last year.

Its a big change to a totally new area. Its a small community surrounded by very good hospitals and schools. I wanted to make sure that all her medical needs would still be met. In this case we will be near Sacred Heart Hospital in Spokane which has the leading neurology department in the region. We will also be remaining in close contact with Averie's mito specialist at Seattle Children's.

Another huge change and a big milestone for Averie is that she will be starting school! First grade...I can't believe it! She is getting so big! School for her has already not gone as planned...as in...she hasn't started and will be 3 weeks behind due to unforeseen court matters. I'm disappointed it got a bit jumbled up, but in the end I know this will not set her back. I am going to be working closely with the school and will make sure there is an IEP in place to make sure her medical needs are accommodated. More than likely this means she will start out school at half days and will work up to a full day. My guess is this won't take long unless she physically can't handle such long days. I hope to have this all ready to go next week! I really want her to get to experience "normal" first grade life! Right now she is socially a bit behind. She doesn't understand fully how to play with other kids her age...like the other day when her and some friends were playing and she came running up to me saying ," Mommy! Libby hit me on the head and called me a duck...why did she do that? why did she walk in a circle hitting our heads saying duck, duck, duck?" I said," Averie, its a game called Duck, Duck, Goose." She said," well, I got up and ran away so she couldn't get me." Lol...it was so funny and at the same time I felt terrible that she didn't understand the game. I want her to know these things and I KNOW she is capable of learning. I am scared to let her go off and be in the school's care, but I know it will be a good learning experience for both of us!

As soon as she starts school and we get moved, I'll update everyone! Wish us luck, because the next couple weeks should be very very interesting!

FED UP!

I started to post this in my Facebook status, but #1 it was too long and #2 this is probably a better forum and people can choose to read it or not. I am writing it tho because this IS part of what Averie is dealing with. To gloss over it and pretend its not there would be a disservice to other families who might be going thru the same thing...so below is my rant...take it as you will...

I don't fucking get it! How is it possible to take care of a little girl who needs $100+ in meds/vitamins not covered by insurance a month when her father thinks that LESS than $200 in child support is all he needs to pay???? You have to be kidding me! I have to find a way to buy Averie's CoQ10 because her father wont! He thinks all her medical should come out of child support...they are two separate things...medical support is in its own category! I can't wait till he gets his official orders...even then he'll only pay the minimum when clearly it is going to take more than that to take care of Averie! Right now I think we are on the cheap side of meeting her needs...I can only for see the costs going UP UP UP!

It might actually require him working harder than he is...although then I guess that won't leave as much time for dance lessons and what not...To add to all of this he is constantly telling me I am LAZY for not having found a job yet( I'd like to see how easy it is for him after 8 years of being a stay at home mom).... then he turns around and tells me he doesn't want Averie in Public school or daycare because of her MEDICAL condition!...how am I suppose to work then? Ugh! ...never mind that I am going to have to balance it all...full time school and paying for Averie to have a place to live, food, school supplies.....Oh yes...I'm so very lazy...

I wish he could just see that this whole thing is about Averie...just Averie and only Averie...I can give a rats ass if I have money for me...I really don't care, but when it comes to my daughter she deserves to be taken care of properly.

So there...that's my rant...maybe not my best writing to date, but sometimes anger does that...my mind is racing because I am trying to make this all work. Its so sad that millions of women are dealing with this exact same thing every day! Where are the real men who make sacrifices and work hard for their families? Are they out there!?

Crazy wild madness!

When did I last write a post? FOREVER AGO!!! Little Miss Averie and I have been go go go for weeks now!

We took a trip to North Idaho where Averie spent a week on a farm taking care of animals, riding a horse, getting to play with little kids. and learning to shift a pickup truck! It was so fun! Averie did awesome! The week started off a bit rough because Averie was intimidated by all the new people. She had several days were she didn't want anyone to "look" at her. She would hide her face and pout and cry if anyone talked to her. All of us just persistanly engaged her and slowly but surely she came out of her shell. I was like a flower blooming! She became chatty and her little comedian side came out. She forgot to hide anymore and soon was playing without hesitation! It was wonderful to watch and it gives me hope that school will be successful, even if it just takes some coaxing!

After our trip to Idaho we came back home and Averie finished up her last week of school! She graduated kindergarten with flying colors and was very proud to show me her diploma. It was adorable! Now I just have to prepare MYSELF to release her into the realm of public school! woo eee!

You think I would have been smart and given myself a break, but we took off on another road trip, this time to Southern Idaho. We were both in my cousins wedding, Averie, a flower girl and me, the maid of honor. I noticed it didn't take Averie nearly as long to adjust to all the new people this time and she was out socializing relatively quickly! I definitely think all this as been great for her confidence! She even bravely walked down the aisle with me during the wedding and didn't cry or complain ( if you know Averie, you know that she has a stubborn streak the size of the Mississippi! ).

All in all the whole month has been fantastic! Averie has been strong and healthy the whole time! No noticeable tremors in her hands and NO seizures! The only problem she has is a hole in her mouth from her FIRST lost tooth! My little girl is getting soooooo big!

Vacation!

I cannot wait till morning! Averie and I are loading up and taking a road trip to Sandpoint, ID for some much needed R&R! I am extra excited about this trip because Averie is going to get to ride a horse for the first time! I have a pretty good feeling she is going to love it. She has a small obsession with horses...hence her horse birthday cake and her Build-a-Bear Pony named Boy...lol..she has been wanting to ride since last fall and we just haven't had a chance till now. I am interested to find out if they have a positive effect on her? I need to do some research, but I know there are many places that offer riding as a type of therapy for children with different disabilities. I've decided that we are going to take our time on this drive...stop and smell the roses so to speak....because sometimes I think we rush to get through life and I want to stop doing that. I want to enjoy every minute I have with my little girl!! :)

Oh! I almost forgot! Averie had a dentist appointment on Wednesday and I'm sad to say, her teeth are as bad as mine were! Lol! She has to have 4 pulled out to make room for the two that are coming in BEHIND them. She also needs sealants on her permanent molars and a good old fashioned cleaning! I was very proud of her for at least allowing the dentist to look in her mouth. He couldn't get much closer so all of her dental work will be done while she is sedated. I have to coordinate with all her docs to make sure she can go under anesthesia at the dental office. More than likely though, she will have all the work done at Emmanuel Hospital in Portland, OR. I will feel much safer knowing her doctors are close and they have everything they need in case of emergency. I am hoping all this work can be postponed till AFTER my cousins wedding...but if not, Averie is going to be adorable missing all her front teeth ( one on top is days away from coming out!) I also think the tooth fairy better be thinking of an extra special reward, cause there are going to be lots of teeth under Miss Averie's pillow!!

Mother's Day approaching!

I am a basket of mixed emotions around Mother's Day. It is such a wonderful time of year to celebrate the moms in our lives! To show them how much they mean to us! I think its also a time to really think about the many blessing we receive as moms. I have really been LOOKING at Averie a lot lately...trying to burn the image of her at age 6 into my head. She is so beautiful, happy, strong and funny! Just this morning she asked if I was feeling better ( I'm on day two of a terrible head cold ) and when I told her "not really", she says to me..."mom, I'm sorry I gave you my sickness". So cute and funny! Also a reminder that her actual sickness is something I wish I could take from her!!! I want to give her all she needs to live a long healthy life, yet I know I am only capable of so much. Its so frustrating, but for all that I am still very thankful that she is HERE! I miss her brother terribly and I can't even explain the pain that wells up in me on holidays like these. I want to say that he should be here now, but my faith tells me he is in a place far better than this. My heart goes out to ALL the mom's who are missing their babies as much as I am. I hope that they can find the joy and peace in the next few days.

Wow! I can't believe that I spent a whole week celebrating Averie's birthday! Some people don't make birthdays a big deal, but I look at each as a HUGE milestone! I want her birthday to be something special to her...and selfishly special for me too! I love my little girl so much and watching her grow and stay healthy is amazing! 2 years ago I might not have believed she would still be here today. I guess that is a lesson for us all.

We packed a ton of fun into the week...birthday dinner at Five Guys selected by Papa Chuck because he was celebrating his birthday as well! Bowling on Saturday with aunts, friends, cousins and even Grandma Markee! Afterwards we came back home for dinner, gifts and cake! She got tons of clothes, a beauty salon from Auntie E and the most amazing pencil sharpener from Crazee Grandma! Also books coming from Ashlyn and a brand new "whompoot" (aka swimsuit ) from Aunt Marissa! Averie is very lucky to be loved so much by so many people! Then after gift opening it was (by special request ) " a cake with a horse on it!" courtesy of Papa Chuck!

If I got to wish a birthday wish......it would be that I get to do this many many many more times!

STAY TUNED!

Highlights from Averie's 6th Birthday soon to follow! We made it to her sixth birthday happy and strong...TAKE THAT ALPERS!!!!

Easter

It was such a fun weekend! Easter baskets, lots of food, a visit from Grandma Neva and a awesome church service!! Everything went smooth...not a single seizure! Yay! Averie got to take her first communion...not probably in the traditional sense, but she wanted to participate so we let her!

Averie LOVES the church music! She never goes back with the other kids because she wants to sing! Then when sermon starts she sits quietly! I am so proud of my little munchkin!

...all's well...

WoW! I haven't posted anything in a long time! I took my first long vacation without Averie and had a ton of fun and was able to relax a bit, but I sure missed my sweet little girl!!! I'm not sure how much she missed me though...every time I would call she would pass the phone off to one of her cousins or was too busy playing to give me much more than a "I love you". I guess she is growing up and doesn't need me as much as I want her too! LOL!
As for Averie's medical status...there hasn't been much going on...and in many ways that is a super good thing!!! It means things have been uneventful...almost like we have a "normal" kid! ha ha! Averie saw her neurologist on Monday and the doctor had nothing bad to say! Her EEG came back with no change..still technically abnormal, but not worse. The doctor also liked that Averie wasn't having noticeable tremors in her hand. We had only increased her medicine a little and it has had HUGE results. We definitely think the only reason it needed increased at all was because she was going through a growth spurt! Sure enough she has gained 4lbs! All of a sudden I am buying 7/8 size clothes and all her pants are short! Good thing its almost summer and she can start wearing capris! This means her body is working correctly! I am just so happy! We don't have to go back to the neurologist for 6 months! I continue to pray for little miracles like these!

She must be 5 going on 16...

Conversation the other morning...

Me,"Since you are being so good you can watch cartoons while you take your medicine."

Averie, " So that's your deal, huh?"

Me," That's my deal..."

Averie shrugs her shoulders, looks at me and smiles, "sounds good mom."

How old is she!! The look on her face and the seriousness in her voice had me stifling a laugh! Making deals at age 5,...what does 6 have in store. Oh that reminds me! She really wants a horse cake this year for her birthday. Pink cake with a horse on it. So I am on the hunt for a suitable cake topper and grandpa will be making the cake! I am pretty sure riding lessons are in her future too!

EEG

So different from our past EEGs! Normally we have to pin her down to get all the wires on her head. She normally screams and cries and becomes hysterical. This time we did a sedation EEG, which uses a drug that relaxes her, but doesn't completely shut her down. Basically had to hold her down for a few seconds and then she was out like a log! It was so stress free I almost didn't know what to do with myself! Actually had time to enjoy a cup of coffee with my mom! They were able to get a good reading and we should have the results soon. Pretty painless! She was adorable as she woke up..I suggested McDs for lunch and all she could mutter was "french toast sticks"! ha ha! that's my girl!

..whats up with all these seizures!

Wow! What a roller coaster these last couple days have been! Three days in a row Averie has had increased breakthrough seizure activity. Yesterday she had at least two drop seizures ( or Atonic Seizures: Atonic means "without tone", so in a atonic seizure the muscles suddenly lose strength. The eyelids may droop, head can nod, the person can drop things or fall to the ground, but usually remains conscience.) She also had what we call "shakes" an exaggerated shiver type seizure where she has more control, but she can't use her eyes and it her head jerks slightly. This morning she had another drop seizure and a couple of shakes as well. Luckily we have a great team down at Emmanuel so we were able to get an appointment for an EEG scheduled and have already increased her Lamictal dose. In a couple of days we should see what this dose increase does. Until then we will just have to keep her from being her crazy hyper self ...take it easy...watch lots of movies and get lots of sleep. I am confident we can solve this little problem. Right now she is sleeping away...hopefully she wakes up in a good mood!

...sleep please!

...up at 3am...and never really went back to sleep...ugh...so much for a fun slumber party. I guess routine means a lot to her. Changing it seems to have major effects on her sleep cycles. Thank goodness I was able to send her home to take an early nap.

Bowling League!

Last Friday we went bowling for Averie's best friend Ashlyn's birthday! Averie was unsure of the whole thing for awhile. I had to let her discover it could be fun all on her own without forcing her. I got her shoes on, but she cried and cried that she didn't like the shoes as we looked for a ball. Finally I sat her on the bench, took off the shoes and told her she didn't have to bowl she could just watch. She sat on that bench and watched the birthday girl bowl for several frames, then all of a sudden! "Mommy..I want to try".

Back on went the shoes and she proceeded to bowl the rest of the game, side by side with her best friend. It was so cute watching them "bowl" . They would sit and watch the ball as it slowly made its way down the lane. Ha ha! As it reached the pins they would jump up and down and run back to see their score.

They totally worked as a team, each taking turns and amazingly not a single argument arose! It is so great that Averie has a friend to help her carry the ball when it gets too

heavy, who explains the game and is willing to wait for Averie to catch up! We love you Ashlyn!

Another child lost to Alpers

Say a little prayer for the family of Freddie Read. He lost his battle with Alpers today...he is joining his older brother, my son and many other mito angels in heaven. His mother is a pillar in our mito community and inspires so many with her story and her courage! My heart goes out to her and a big virtual hug as well! Freddie will be missed by so many, even though many of us have never even met him! I will miss those beautiful eyelashes for sure!

XOXOX

I seem to meet a new family who facing the challenges of Alpers each week. My heart goes out to them and I want to be there for them! We didn't have anyone when our son got sick almost 5 years ago...but now, there is this little community forming that is getting louder and stronger every day! I remember what it was like before Averie's diagnoses, we didn't understand what had happened to our son. We didn't understand Alpers. The name Alpers had been thrown out there as an underlying cause for why Lane was sick, but all we understood was the devistation that it caused. At the time we were told it only affected children under the age of three, so when Averie turned 4, we naively thought"Thank God! Averie won't be sick!" Then June 11th 2008, she began to complain of a headache so I had her take a nap with the expectation that sleep would cure it. She woke up; throwing up and we realized she couldn't see us. She was really scared....we were really confused and then we saw the seizure activity in her eyes. It was deja vous! It was like looking at Lane's eyes. Immediately we got her to the doctor and thankfully they got her seizure stopped because we were able to alert the medical team to our family history. She needed to be intubated due to high CO2 levels and they began a series of tests to find the cause. The doctors poured over Lane's medical history and were able to rule out many things right away. It took four more PICU stays, a muscle biospy, and countless blood tests before we confirmed the Alpers diagnoses. I remember the call clearly as Dr. Metrick, Averie's neurologist, told me that Averie suffered from Alpers and they had confirmed it to be the cause of death for Lane. I remember sinking to the floor and crying as I thought about the years of unknowing that surrounded Lane's death. That chapter had finally closed, yet I kept thinking...we have to do this again? What does this mean...she is different from her brother. We won't let her take the nasty Valproic Acid that became a toxin in her brother's body! Her doctors know more than they did 3 years ago, and she seems so much stronger than Lane did!
And so far, the meds HAVE been working. No major seizures since Sept. 08. She has days like today, when she is fighting a cold, that she is extra shaky...has dark circles under her eyes, but she is still here...still fighting...still somehow not progressing as they told us to expect. She is my little She-Ra! My little Wonder Woman! I pray everyday that there is something in her that will be the answer another family is praying for. I don't know, but I sense a bigger purpose here.

Extremes...

One minute Averie is happy go lucky little five year old, then BAHM! A tornado hits!
Just Sunday she woke up happy and cheerful and was being a sweetheart! Then, I pour milk on her cereal ( which I do almost every day ) and she breaks down...crying and sobbing..telling me to take the milk off her cereal. I try and be rational, explain it's not possible and she goes crazy! Screaming and throwing a tantrum. I normally only see her do this when something is out of routine...like heaven forbid I give her meds out of order. I HATE when she acts like that, but I have learned the most effective method of calming her down. WALK AWAY. yup...just walk away...I can argue till I am blue in the face and she just gets more and more agitated, but if I simply tell her she can cry and I walk away for a few minutes, she will stop. Once she calms down she is back to her normal self. What I want to know is this: Are the meds making her this way? Or some unseen activity in her head? Or is this just her? Her personality? After she finally calms down I see a shakiness that wasn't there before..she is more unsteady and her hand is moving constantly. On these days she tends to always take a longer nap. I can only imagine how much extra energy it takes to get so worked up.
Thankfully that particular day she did calm down,..took a good nap and we finished the day off with Mommy/Daughter Date to Alvin and the Chipmunks the Squeakuel! She sat and ate her Happy Meal ( she totally suggested sneaking one in ) and smiled and giggled her way through the movie. Then during credits she got up and danced at the front of the theater, one of her most favorite things to do! Her dance style is somewhere between Mary Katherine Gallagher( SNL ) and Elaine (Seinfeld)...its completely ridiculous!

I love my little girl...no matter what extreme mood she is in!

I have to start somewhere...

wow...I have been saying I was going to do this for a long time. Its not that I don't have a lot to say, but taking that step to put fingers to keyboard and tell it like it is has been a hard one. I did a lot of reading over the last few days after learning of another family who is losing their battle with Alpers disorder. It has made me sad and angry. I know that our story isn't over and there is so much that could be learned by me telling what goes on...good and bad. Please bare with me as I learn how to work this Blog and as I gain my voice. My greatest wish is that other families will find this and find answers, inspiration, hope and some humor. I won't pretend for one second that I am an expert on Mito Disorders...ha ha..that would be funny( since I haven't even had a science class since 10th grade)...but what I am expert on and know everything about, is being Averie's mom.