Life on the mend!

            Avri is doing great. She went back to school last Monday.  The only time she complains is when she has to go to keyboarding at school. She sent me a text on Monday this week asking me if I could come pick her up. I text her teacher and he had no idea she had sent me the text. So when I text her back and asked her why. She said "because I hate keyboarding"  Sad for her. I made her stay and finish out her day. She complains on almost a daily basis now that she needs to go to the eye doctor before she can go to keyboarding because she can't see the book. Funny thing is...her keyboarding book is the only one she can't see.
            She does seem to burn out a little faster than before, but I would imagine she is still recovering.  She is looking forward to summer break for the first time since I can remember. She loves school that much!
            She also has been babysitting here and there for a neighbor and had some birthday money she saved up. So her dad just ordered her an adult tricycle (he paid half). (she had one built for her out of an old bike a cpl years ago, but it never did work right.The chain would never stay on, and it would not shift gears)  I am looking forward to seeing her ride it!

Silence is the key of comfort!

            I went to bed really worried last night. In the past most of Avri's big seizures came around 5am. I finally fell asleep around 1:30am...well that was the last time I looked at the clock. My night was full of screams and my kids yelling out "MOM". I got up once around 3am and then again some time later, sat up a number of times. SILENCE...all was good and calm in all the minds of my kids. The only screaming and yelling out was in my own mind!  

            As I go through the challenges with Avri's health and my crazy out of control son and my  4 other  children. This is a great reminder quote! DON'T GET ME WRONG HERE... I love being a mom but it has come with great challenges! Motherhood truly has been about the moments! It is frustrating to get up in the middle of the night to make rounds, but there is also a moment to take in when you see your peaceful children in a restful state.  It can bring you comfort and piece.... kind of reminds you where they came from!


"Recognize that the joy of motherhood comes in moments. There will be hard times and frustrating times. But amid the challenges, there are shining moments of joy and satisfaction. " By M. Russel Ballard

Maybe seizures are going to be a new part of life Again.

            Avri has been doing so good. I talked to her teacher today about maybe letting her come back to school a day early. She has a couple days worth of antibiotics left and her course is done. She has been following me around so irritated all this week. The fun is over for the both of us. She just wants to go back to school. She loves the social stuff. Tonight I had her run something  over to a neighbors house and all the sudden she is having a partial seizure. The neighbor walked her home. She had this slight body bounce going. she was rubbing her fingers on her button on her pants, she was shaking and was white as a ghost. She said her hand and throat hurt. I was able to sit her down and had her say her alphabet a few times, then try backwards. Her color slowly came back and her speech became quicker by the third time around of alphabet repeats. She came out of it.  She had weird hot flashes for about the next hour (She was rubbing her face so violently I thought she might rub it off) She was in and out walking out side to cool off then right back in because she was cold. She finally calmed down and seemed normal again.  She is a bit more shaky than usual and that is a worry!
              She came in before bed time and told me "I set my alarm for 6:30 because I am going to school tomorrow". I told her "she was not".  That did not set well with her. She asked me why and did not seem like she understood my explanation.  I am not sure what to think at this point. I guess maybe it is time to see a neurologists again. She has an appointment with neurosurgery in a couple weeks for another scan. The seizures scare me to death, so we will see what happens between now and then.      

Part 2 of "little big sister story!

            Here is what I was told!   Hattie has a mass in her brain! Neurosurgery is no longer sure what it is. They want to operate to remove it.  Here is a list of the cons of not doing the surgery.
At this point they were not sure what exactly it was, so cancer would surely kill her.
This mass appeared to have a crust around it...this meant that if it was blood vessels like they originally thought, it had leaked. The crust was blood that formed around the mass.  If this was the case it could continue to leak. Eventually this would lead to a massive stroke I was told between the age of now to 24. A massive stroke could cause a number of problems including death.
            If we chose to do the surgery. The risks were. Lose of eye sight in the one eye, memory loss, (which included identity, loved ones, all motor skills)  The best way to describe it would be that they were erasing her hard drive and I was going to have to start all over with everything I ever taught her.
            As parents the thought as Hattie's parents were. We could not go day to day wondering if this would be the day she was going to throw a clot in her brain. We had seen how resilient Avri was. Kids in general are very resilient. Hattie was a fighter. Her will to run, play and just live life was to great for her to not make it through this surgery with a full recovery.
           I did the one thing I could do. I shaved her head! I let her cut it until she was done and then I gave her the clippers. We together made it a fun event instead of of trauma on both of us.  I asked my church ward to have a day of fast and prayer for her. I left the rest to the hands of the surgeon and God.  The surgery lasted 5 hours. I got updates about every hour and a half. " we are still dissecting the brain, she is stable, vitals look great, we will call you in about another hour and a half"  The last call in the waiting room that came through for me " Hattie is out of surgery, everything went well, the mass was leaking blood vessels, we showed seizure activity in that spot once we got to it. She is in recovery they will call you in about an hour to go see her" "we still do not know her functioning level so prepare yourself".
          I kid you not...Recovery paged over head 15 minutes later. This is what it said "we need the mother of Hattie Davis to recovery stat!' " She is yelling for her mother and her yellow blankie"   I can not tell you the joy in my heart at that very moment!  I knew she was OK. She knew me and she knew her favorite blanket.  I ran down the hall, their was a lady waiting at the door for me and brought me in to Hattie. O...She was mad. She was so mad "why did I do this to her? What Happened? This hurts! Take me home!  I cried and kissed her and thanked heaven above for not changing her!  The surgery required the surgeon to remove the entire left side of Hattie's scull, so she had a lot of swelling in her face. She woke up day 2 and yelled "I'm blind" it actually was funny because she was smiling as always! Hattie was expected to stay at least 1 week in the hospital. She refused to do anything they asked of her unless she could just go home. I was able to bring her home after 4 days.  I can say the one thing that changed!  To this day Avri has a sister who understands what she is going through. Hattie has stuck up for Avri and sympathized with each of her surgeries. Not only for Avri but for me...as she was able to finally see the whole picture.

The day she went home

Nothing's going to slow her down
        I took Hattie in for her 1 year follow up and the MRI showed nothing. The surgeon said usually they can see scarring but it was as if she never had the mass in the first place. She is almost 11 now and she is still just as hard headed and determined as ever.   

This is little "big" sisters story!

            Avri has a sister that is 3 years younger than her. Her name is Hattie.  I always said from the day Hattie first starting kicking me in the womb that she was going to be a fire ball.  To this very day "I was right".  Hattie was born and from that moment on she wanted me and only me. She wanted my world to revolve around her. She demanded it.
            Hattie struggled when Avri was in the hospital because it took away from her. Hattie would come up to the hospital. From her perspective she saw, video games, movies, arts, crafts basically anything you want you get.  Primary Children's hospital will go out of their way to make these kids happy. Hattie was 3 at the time and she did not understand that all that entertainment and the treats all came at a very painful cost.  With each of Avri's visits Hattie struggled. She would get mad at Avri. She thought "this is not fair" She would ask when it would be her turn to stay in the hospital.She also felt hurt from me that I was favoring Avri over her.  Most kids at the age of three really don't have a sense of true pain. You can show them the stitches, you can explain until you are blue in the face.   It can't register as deeply as it should because they don't know any better.
             I noticed that Hattie was becoming more and more unruly. She also had started these episodes where she would turn white as a ghost and she would make this swallowing motion as if she was trying not to throw up. I can't count the amount of times I would pick her up and dash to the toilet and hold her over it.  She would almost instantly look at me (very confused) and say "what are you doing"?  She never did throw up!  I was pregnant with the twins at the time and I was so sick. Matt (her dad) took her to a doctors appointment.  The nurse came in and took all the notes. She asked why they had come in. Matt explained that she seemed to be having these episodes where she would go pale and then seem like she was going to throw up and then she would be fine.  SO then the doctor walks in for the exam and says "So whats going on Hattie?"  She replies "MY BOOBS HURT!"   Matt very quickly throws out "my wife is pregnant"  After a brief exam, The doctor says "She is mimicking her mom"!    As funny as that was, I was not convinced that she was mimicking me.  I began to research on the web. I found that the episodes she was having sounded just like a type of partial seizure. I took her to a different doctor and he was not confident that I was right but agreed enough that he ordered an MRI.
            Hattie was to young to hold still for an MRI so she was sedated for the imaging. I was still sitting with her in the recovery room when the doctor came in and told me she had a small mass in her brain.  Of all things that was the last thing I expected to hear.  He told me it looked like a hemaginoma (this is a big mass of blood vessels)  I was not told more than that.  I drove home a teary mess. Not only was I dealing with a new medical problem but I was pregnant with twins and my hormones were crazy!
           The following day I set up appointments with neurosurgery and neurologist. Hattie had a quick EEG. The test showed no seizure activity. Then we talked with neurosurgery. They wanted more studies. So Hattie finally got her wish. She was admitted to Primary Children's Hospital for a week long EEG. She was hooked up to a million wires and her head was wrapped in gauze. She was not allowed to move except to go to the bathroom for 1 week. Let me tell you how fun that was.  Nightmare for both of us!  The bad thing with all that was more than anything Hattie did not understand Avri's  pain issues because she spent the time in the hospital now and she did not get poked...Not once!  Hattie's week long study came up with nothing. We were told not to worry and that she would be fine. Go home and forget about it.  OK...hard to do, but we did.
         A few month had gone by. It was 3 weeks before Christmas and I got a call from neurosurgery.  The team had been reviewing imaging for learning purposes and in the process came to the agreement that this mass in Hattie's brain may be some kind of cancerous tumor. The doctor said "it looked like it may actually have a crust around it" Which would indicate tumor instead of blood vessels.  I was told they wanted to operate after the holidays. I was to shave her head 1 week before Christmas just to give her time to get use to the bald head.  He explained that this would be a lengthy surgery and in a part of her brain where senses and memory were controlled.  They wanted her to wake up with the least amount of confusion possible.