EEG & MRI

On February 25th, Dave & I took Abi down to Primary Children's Medical Center to visit with her Neurologist, Dr. L.  She's started having an increase in seizures.  We also were seeing a change in her behavior.

Not so sure about the head wrap.

Abi had an EEG done & then a quick visit with Dr. L.  Her results show that she no longer is having Infantile Spasms.  The hypsarrhythmia that normally shows up on her EEG's is no longer there.  Dr. L said this was the best EEG he has seen of Abi's.  He diagnosed her of having Complex Partial Seizures.  He increased her Rx & is hopeful this will control the seizures.  He couldn't tell us why she had those "drop seizure" episodes.

When Abi has her "normal" seizure, there is a pattern.  She usually will come find Dave or I and grab a hold of our leg when she feels it coming on.  Or we can see that one is coming just by the look on her face.  Her seizures start out really light.  We notice her lip will quiver and the left side of her body will stiffen.  This gradually gets harder and more intense.  She hits a climax where her seizure is really intense & exhausting for both her & I.  She folds at the waist while her entire left side stiffens.  Her left eye winks & she lets out heavy sighs.  They come in clusters, so she has about a 10 to 15 second break in between.  Slowly the seizure weakens & tapers off to nothing.  She then is back to herself & goes on with her day. She is usually tired after, & sometimes will fall asleep.  But, Miss Abi is a busy body & does not stop going.  These seizures can last anywhere from 15 minutes to an hour. 

A few days before we saw Dr. L, Abi had had her "normal" seizure.  When she is finished having it, she usually gets back to doing what she was doing before they even start.  This she did.  But, not too long after, I noticed Abi fall head first to the floor.  So I ran over to her & held her to see if she was going into another seizure.  Nothing happened, so I let her get up & start going.  As I was walking back to the kitchen, I noticed Abi following me.  I caught her just in time before her head hit the tile-  Another "drop seizure" happened.  About 15 minutes later, I got her into the tub.  I was just about to take her out when Abi stood up, which she never stands up in the tub & dropped again.  There is no pattern to drop seizures. As I was getting Abi dressed after her bath.  She seemed fine.  She started playing, & then dropped.  So I held her to make sure nothing was coming on.  NOTHING.  So, back to playing & she dropped again.  This was so frustrating for Dave & I . She got to a point that she wouldn't even walk, cause every time she would get up, she'd drop.  We had Jared, my brother come over & help give Abi a blessing.  She slept like a log that night.  The next day, it happened again, but this time she only dropped twice.  So, we were hoping that the Dr. could tell us why she was having the "dropping" episodes, but there is no answer. Since then, there have been no other "drop seizures" occur.  It still concerns me.  Especially when she is at school.  I hate not being there when she has a seizure.  

Feeling a little "drunk"....

A week after Abi had her EEG, she had an MRI done.  We were concerned with Abi throwing these tantrums where she would scream & hit her head for about an hour.  Her MRI came back with no new surprises on them.  It was our first time to actually speak to the Radiologist though.  That was nice.  He explained to us exactly what was going on with Abi's brain.  We already knew what was going on, but it was nice to actually have someone speak in our language & to hear it again & understand completely.


So, an update on Abi as of today.  Her seizures are still daily.  The increase in her Keppra has not helped.  She is more agitated & aggressive.  She hits more & screams more.  She does have her good days though.  She says new words daily.  Sometimes we only hear her say them once or twice, but other times they stick.  I do think we need to try a new medicine or new route as to why she still is having the one seizure sneak in everyday.  She did have a few days where she had 4+ seizures a day.  That could be because of the weather & the barometric pressure and also she had the flu.  But usually she has a seizure a day. 

 I am proud to be her mom! I love her so much & she really has blessed my life! 

3 Years

Three years ago today, I thought was the worst day of my life. Abi was diagnosed with Aicardi Syndrome. I remember feeling like my heart had been ripped right out of my chest & torn in half.  Looking back, we have experienced many ups & downs with Miss Abi.  She has overcame so many obstacles & achieved milestones that we were told she may never do. She is our miracle. We love her so much! We are hopeful for her future & are grateful she is ours!

It's been awhile since I've blogged; So I will update you on Abi's current happenings.

• In April 2010, Abi started walking. She not only walks, but she runs everywhere.

• Abi can feed herself. We no longer have to spoon feed her. She is doing really well with holding a spoon or fork. She is a bit messy, but she can feed herself & for this we are grateful.

• Her vocabulary has expanded GREATLY! Here's the list of words she can say:

Dad (Da-Dee)

Mom (Momma)

Eat (Eeeet)

No

No Way (noway)

Cookie

Drink (gink)

Hello (hewwo), Hi (hieeee), Hey (aye)

Puppy (Pu-pee)

Ball (bawl)

Bubble

Night Night (nigh nigh)

Knock knock (Nah Knock) & knocks on anything that makes a noise

Banana (na-na)

Go

Baby (bay-bee)

See ya (seeya)

Jump (mum)

Uh oh

E-I-E-I-O

Cow (c-oh-w)

Doggy (DahGee)

Elmo (Ehmo)

Boo

Wee

Kitty (Ki-eeee Ki-eeee)

Meow (Neeee ow); We'll say, "Abi, what does a kitty say?" Abi: "Neee ow"

Ho Ho Ho; We'll say, "Abi, what does Santa say?" Abi: "Ho Ho Ho."

Grandma (Ma-Maw)

Grandpa (Paw-Paw)

What's that? (wa-sat)

Yummy (MMmmeee)

Stay (StaYEEEEE)

Bird (bibp)

Apple (Bapple)

Bye Bye (Bu-Bye) & waves

Owie (Wowie)

Hot (hosh)

Soft (sosh)

Abi (Babbi)

Eyes

See

Tree (ree)

Moo (mMMm)

• She can sign: eat, drink, grandpa, grandma, mom, dad, more, shoes, bird, please, thank you, cracker

• She LOVES music! She will sing, dance, twirl or sway back and forth when she hears it. She can fill in the blanks to the songs: Popcorn Popping on the Apricot Tree, Old MacDonald, & I Am a Child of God.

• She is socializing more & enjoys going to preschool.

• She sleeps in a "big girl" bed & sleeps all through the night.

• She LOVES to read or be read to. Books keep her entertained & it's so cute to watch her read.

• She's learning her body parts. Nose, eyes, ears, belly, hands, toes

• She starting to play pretend. She will carry her cabbage patch around & kiss it.  Abi also plays pretend phone.

• She gives kisses & hugs.

Abi still has spasms/seizures. Lately, one spasm, every day, is the norm. But sometimes we are lucky & can go every other day or two days in between. She warns us when one is approaching. She'll come stand by me & hug my leg. She has picked up this horrible tantrum where she screams & slaps her head over & over. We're not sure if they are headaches or she feels a seizure come on (sometimes a seizure happens & sometimes it doesn't). I have an appointment with her doctor to discuss it.

She is a joy to be around. She has a contagious smile that melts my heart every time. I'm so grateful for her. Even with her challenge, she has taught us so much! She is very forgiving. She loves her sisters. She's Lyvie's shadow. She follows Lyv all over the house, & Lyv is so kind to let her join in in most anything she is doing. And she is finally starting to like Sophie. They have a cute bond. Sophie can be laying on the floor & Abi will go sit by her. They give each other a look, then the laughing begins from both of them. It's quite cute!

I LOVE my family so much! They are my life, my world! It's hard to imagine what life would be like if they were not here. I'm grateful every day for them. I need to be more thankful & not take them for granted. Cherish the ones you love. Let them know you love them. You never know when it will be your last.

Happy LOVE Day!!!

The Yogurt Cup

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Earrings!

Today, I took Abi to get her ears pierced. Michelle & Hadley came along, & Chelle got Hadley's ear's pierced too! I had to help hold Abi down. She hated me touching her head. She screamed & cried. I was a sweaty mess afterward. The lady that pierced her ears gave her a sucker and instead of Abi sucking on it, she bit it & ate it fast. She ended up getting 2 more suckers to keep her occupied. So far, she hasn't bothered them. She looks darling!

:Walking:

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This is one of my proudest moments of being a Mom! We've been working with Abi to walk for awhile now, but tonight, she was ready to show me what she has been hiding.
Right before I took this video (along with 8 other videos) of her walking, I looked over at the couch, and Abi had let go & had done a total 360 turn around without any help or support. So, that led me to see what she could do walking wise. She definitely has proven herself that she can do things that we were told that she may never do.
I definitely cried tears of joy tonight & Lyvie screamed lots of "Yay Abi!" I couldn't have captured these moments without the help of Lyvie.

I am one happy mommy!

I love my girls!

P.S. Sorry for a naked little girl, we were just getting ready to have a bath.

What a way to end the month!

Abi started crawling!!!

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She has taken off these last couple of months. The milestones she accomplishes, whether they are BIG or SMALL, are HUGE to us! We are amazed at everything she is doing. Every week she is doing something new.

Happy 2nd Birthday!!!

August 12 (Abi's birthday party) & 13 (Abi's birthday)

Abigayle turned 2 years old!!! Where has the time gone? We had a family birthday party in our backyard the day before her birthday. It was a lot of fun! She got lots of toys and cute outfits. She didn't care for cake or ice cream, which comes as a shock, because usually she LOVES ice cream. But it still was a good time.
Abi, we have loved having you as a part of our family! You never cease to amaze us. We are excited to see what you will be doing now that you are 2!
We Love You FOREVER!!!

Army Crawl & Signing!

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Abi started to "army crawl"! And she signed "Grandma"!
GO ABI GO!!!

Glasses!

Abi got glasses!

May Update:

Abi is doing great! She is progressing daily! Her spasm/seizure activity is still down, which is great!!! She went almost a week without anything, but they have slowly come back. She is not having anywhere near as many as she used to. She has 1, maybe 2 during the day, & only if she is startled while sleeping. And they are not everyday. We'll take it! I still have hope that they will someday stop completely. She recently figured out how to sit herself up from a laying position without our help. What an accomplishment. She's a determined little girl & doesn't give up. Her therapies are going great. Her PT thinks Abi may walk before she crawls. She has some strong legs & loves to stand up against things or in her walker or bouncer. Sometimes she'll even willingly move her legs while we guide her to walk. But she also is starting to tolerate being on her hands and knees while we rock her back & forth. I can now let go & she has enough strength to stay up & rock back and forth by herself. So, we'll see what she ends up doing. As for OT she has figured out how to take items out of containers. We are still working on having her put items back in containers. This is all part of problem solving. She no longer is putting items in her mouth as soon as she gets them. I didn't realize it was part of development until her therapist brought it to my attention. The little things that we take for granted are so big to us. She also has a SLP & we enjoy when she comes. We do a lot of mimicking & singing to her. I am excited to take her back to music classes. She LOVES music!!! I did ask if we could start introducing American Sign Language to her. I don't know if we'll see Abi talk anytime soon, if at all. But, I do know she understands. I feel strongly that she needs to learn a way to communicate to us, & this is probably one of the ways that will help her do so. She is doing very well in her health & development. We are truly blessed & know the Lord hears and answers our prayers.
P.S. We took her binky away. =)