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. =)

ABIGAYLE

A couple days after Abi finished her injections we started to notice a rash on her belly and back. Well after 4 days of it, it had spread to her face, behind her ears and up in her hair line. I took her to the Doctor, not thinking that is was a huge deal, until the Dr. diagnosed her with Scarlet Fever!!! He informed me all it really was was a bad rash & strep throat. He said it's just a fancy term they use. Anyway. I felt horrible. She didn't seemed bothered at all & was eating fine. But after 2 days of antibiotic, Abi started to act sick. A week & a half later, I'm happy to say, she is much better & her rash is almost completely gone.
Anyway, it's been 2 weeks since Abi has been off of the ACTH. What a change we have seen in her. We literally have a brand new girl. A girl we've never seen before. She is doing so much more than she ever was before she was on the ACTH. She regressed while on it, but most everything & MORE came back as soon as she was finished with the treatments. She is rolling, starting to clap (only on her time), waves "Bye-Bye" & "Hi". She's grabbing for things, using BOTH hands, hitting toys together, studying things... such as our faces, designs, pictures, things she never noticed before. She also bounces to music, almost can pull herself up from a laying position to a sitting position, & grab & hold onto finger foods. The biggest accomplishment we have seen in Abi, is she laughs. She didn't laugh much before, & never laughed while on the ACTH. To see a new light in her eyes & to finally hear a real laugh come out of her is amazing!!! Her weight is slowly decreasing. But we have gotten used to her chubby self. She has been wearing size 3T tops. So, pretty much sharing shirts with Lyvie. Lyvie thinks it's pretty cool, so I can't complain. She is still pretty hairy, but we've have been told by many & also Dr. L that the hair will fall out. I don't mind how thick the hair on her head has gotten or even how long her eyelashes are. But her brows need a definite waxing!!! She is still cute though. Nurse Julie came by yesterday to take one last look at Abi & checked her vitals. I am happy to say everything is normal. What a relief!!! As for her spasms...they are back. She is having one or two daily. BUT they are only when she is woken up from sleeping, or startled while sleeping. They still look like the Infantile Spasms, but we are still hoping that they'll go away. Dr. L informed me that it may take up to 6 weeks until we see a change with the spasms. He said the ACTH is just waiting it's turn. As for groups. She can go out in public in about 2 more weeks. I have to admit, we have taken her out a few times. She cannot be immunized for another 3 months & cannot be around anyone who has been recently vaccinated with LIVE vaccines... such as Chicken Pox, MMR, or Oral Polio vaccinations.
We are so happy to have our "OLD" Abi back, & also the "NEW" Abi. She is so fun! And it is fun to watch her & Lyvie or any kid interact. She's a very happy girl. Sleeps great! And is learning new things everyday!!!

Here is a video I took of Abi laughing last night. I have never seen her laugh this much in her whole life. So it's way fun to watch!

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