Sunday, May 8, 2011

Something More:

Some Mothers Get Babies With Something More
Lori Borgman | Monday, May 12, 2002 
 
 My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. 

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. 

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). 

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. 

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. 

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. 

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. 

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. 

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. 

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. 

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear. 

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. 

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. 

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. 

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. 

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. 

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Thursday, April 7, 2011

Welcome to Holland:

First of all, I just want to say how truly blessed I am! I am blessed with such wonderful friends & family!  It's amazing to have their love & support.

The last 3 years have been quite the ride; Something that you're not quite sure what's going to happen next.  We have had to put our complete trust & faith in Heavenly Father.  I am not going to lie, there have been times where even then I have questioned Him. But, this I do know, He has His hand in all things.


Abi is such a special SPECIAL little girl! She's opened my eyes to a whole new world that I was missing.  With that being said... I read this story & cried.  I completely understand. It has touched my heart.


WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Monday, March 28, 2011

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! 

Monday, February 14, 2011

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!!!

Friday, March 12, 2010

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!

Monday, February 22, 2010

:Walking:


Photo and video editing at www.OneTrueMedia.com

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.

Monday, August 31, 2009

What a way to end the month!


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.

Thursday, August 13, 2009

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!!!

Sunday, May 31, 2009

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. =)

Friday, April 3, 2009

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!


Monday, March 23, 2009

Last few weeks on ACTH:

Week 6 (February 21 - February 27) *40 units/ml*: By this week Abi was on the upside of the RSV. Her weight & blood pressure fluctuated, & we noticed more swelling in her face. This week she had more spasms then ever while on the treatments. I think we totaled 8 that week. She had over 4 spasms in one day (which was a big disappointment). We had a few nights where she had a hard time sleeping. The only way she was comfortable was if Dave was home & he would rock her in the chair. He would do this every night as soon as he was home from school, until bedtime. She didn't want anything to do with me. She became really attached to the male gender only!!! And she also liked the little bed I made for her in the living room. She would nap really well if she was in that spot.
Week 7 (February 28 - March 6) *30 units/ml*: This week we felt like Abi had really started to retain A LOT of water. She lost her neck (notice the picture), & was pretty irritable. Her blood pressure reached a whopping 118/60 & her respirations were very quick. We couldn't seem to keep her comfortable. But when you're bloated, you don't feel good at all. Again, she didn't want anything to do with me. All she wanted was Dave, my dad, my little brother, or anyone who was male for that matter. As for her spasms for the week...1!

Week 8 (March 7 - March 13) *20 units/ml*: HELL!!! That's all I can describe. Abi was miserable! She was so swollen, that every time she moved she would cry cause everything on her body was stretched & tight. We spent a few times without sleep, & rocking her in the chair. She became very constipated by the end of this week. We tried Miralax (which we give her daily), suppositories, Juice, Mineral Oil. And still nothing. Her weight got pretty high. One day she had gained 2 pounds. (In a day!!!) Spasms activity, 1!!!

Week 9 March 14 - March 20) *10 units/ml*: THE LAST WEEK!!! Abi had become constipated in the last few days of Week 8. By the time Monday (week 9) came, I became a bit concerned, because here she was with all these remedies for constipation in her, & yet nothing had happened. But her body finally kicked it in gear & eased her pain. She was so much happier, & her smile started coming back! By the time her last injection treatment, Abi was a totally different person. She had found her smile. Started to hold things on her own again, move around, she rather sit up than lay down, & she was just all around happy. Her vitals were great, back to normal. The only thing that was up was her weight. As for spasms, 2.

I cannot tell you how happy we are to be finished with the treatments. This was such a big decision that we had to make for Abi. I've had many people ask me if we would ever do another round of the ACTH for Abi, and my answer is NO!!! Yes, we've received positive feed from it. We've seen her spasms go from 3 or 4 a day, to roughly 1, maybe 2, a week. But in the long run... so not worth the stress on her. She regressed in everything that she had learned, but she also started to do things that we weren't expecting her to do so quick. To see the stress it put on her body, was heartbreaking. Worrying if she was going make it through one more day, was exhausting in every way you can imagine. It was a very risky treatment, & we feel like if we cannot completely get rid of her Infantile Spasms, then that is who she is! Abi, may always be our Abi who has seizures. But that's okay. We have come to accept that. I have grown so much closer to my parents & siblings, & to Dave's parents & siblings. Not only have I grown closer to them, but I have grown closer to our Heavenly Father. I had to put my complete trust & faith in him. ( I still do!) I have learned so much more about myself & about what I CAN handle. People have said, "I don't know how you do it. I don't think I could do it." We did this for Abi. We made it a routine & was able to get through it. When its your child or someone you love, you would be surprised what you CAN do. We are not out of the woods yet. Now it's just a waiting game. The spasms can come back, but hopefully they won't. It's all up to the Lord.

I want Abi to know how truly amazing I think she is. She is my hero! To agree to such a challenge while in heaven, makes me admire her more than words can say. She is very loving, unselfish, happy, STRONG, contagious, determined, lovable, beautiful, sweet, easy going (when not on ACTH), & the list could go on & on. I love her with all my heart & soul. My girls are my world!!! I am proud to say I am their mom! I am proud of Abi, & the example she is in our home. She is a very special girl! She has a spirit about her that I cannot describe. You have to be around her to know. I am thankful for the Lord & for him giving Dave & I the opportunity to raise such a choice spirit. I love you forever, Abi!

Sunday, February 22, 2009

Water Retention

This is a picture of Abi, a week before starting her on the ACTH

AND

This is Abi at the beginning of Week 6 on the ACTH

One of the side effects of the ACTH steroid is, water retention. This is by far the most swollen we have seen Abi. You can see how swollen she is throughout her body, but her face is the most noticeable.
Carol, one of her weekend nurses came on Saturday & couldn't believe the change in her. It is definitely sad to see her go through all of this. She isn't moving around as much as she used to. But the Dr. said once she's completely off the treatment, our precious Abi should return back to herself. I'm excited for that day.
As for the RSV, I think we're almost out of the woods. She's doing much better, & just has the lingering cough. She is still pretty irritable & doesn't like Mom so much. The nurses & I have come to the conclusion of why she isn't too fond of me right now; It's because I am helping hold her still while she gets her shot & checked daily. Daddy is her rescuer & that is why she wants him constantly. Sad, but TRUE! Also, she's a big fan of Grandma Jaques too!

Sunday, February 15, 2009

Long time....

Abi is one tough cookie. She is definitely been on a roller coaster ride these past 4 weeks, but still seems to pull through it. I really want to post more about her in a separate post. So I will say this... She is growing really fast & has definitely accomplished some BIG milestones. We recently finished the tapering of the medication, Topamax. What a relief to have her off of it. She is a new person. You can literally see the sparkle & clearing in her eyes. There used to be a different look in her eyes. A fog you would say. She no longer is in that fog. She is now holding her bottle all on her own. Pushing up on her hands. She enjoys rocking back and forth while on her hands and knees (with the help of Dave & I). She is using both hands at the same time. Holds onto things with BOTH hands, & transferring items from one hand to the other. She loves to look at pictures, especially of Lyvie. When she sees a picture of her, she will look at me, back to the picture, tilt her head, smile, jabber at it, & then reaches for it. That is another milestone, REACHING. She now will hold out her arms when she wants us. It is such an amazing feeling to see her have all these feelings & emotions. She also is going through the attachment stage. As annoying and hard as it can be, it is such a relief to see her go through it. And now she is recognizing people she knows and people she doesn't. She shys away from the people she doesn't know or doesn't like (the nurses). Some of you may know it as, "Stranger Danger". And she recently has become very attached to her dad! She gets so excited to see him when he comes home. Our little girl has definitely blossomed. She is our little miracle. And we can testify of those miracles.

:ACTH & RSV:

**WARNING!!! VERY LONG POST! STOP READING IF YOU WANT**

It's the beginning of WEEK 5 since we started Abigayle on the ACTH injection treatment for her Infantile Spasms. What a ride. We have seen ups & downs with this medication. I have mixed feelings on it, & am still weighing out the pros & cons of it. We've seen positive side effects, & the negative. It's all about our faith & trust in the medicine, the Doctors, & in our Heavenly Father.
Week 1 (January 16 - 23) *80 units/ml*: Everything went well. No major side effects & Abi was all around happy. She did go a few days without any spasms & maybe had 1 the first Sunday, which only was a head drop, and that was it. At the end of the first week, Abi started having the spasms, but only 1 a day, & really short. I don't know if it was due to her having a low grade fever & teething, but that is a possibility.

Week 2 (January 24 - January 30) *80 units/ml*: Abi started to get a little irritable. She was still doing pretty good than we expected, and we were grateful for that. She would go a day or two spasm free, but then would hit three days in a row with spasms... but still only 1 a day. By the end of week 2, Abi had cut her top canine teeth, & was very irritable. Her weight stayed pretty consistent & we didn't see too much water retention or a rise in her blood pressure. The only side effect we did see was she was grumpy & uncomfortable.

Week 3 (January 31 - February 6) *80 units/ml*:Probably our worst week. By this time we should have started the taper of the ACTH, but where she still was having spasms, Dr. L wanted to keep her on the high dose for 1 more week. This was definitely the hardest week. We started to notice the water retention, increased appetite, irritability, weight change, a rise in her blood pressure, & constipation. There were a few nights where we got little sleep. The only thing that saved us was her vibrating chair that was too sizes too small for her. But it worked , & she stayed content. I, also by this time started to do more infant massage's for her, & although she screams through them (she's getting better), by the time I am finished, she is SUPER relaxed & calm. If I give her a massage, she ends up sleeping through the night. She was retaining water, & soaking through diapers every 2 hours. We ended up waking up every night to a soaking wet girl due to sweating & pee!!! Changing her bedding every night gets old, but you do what you got to do. We started to notice the weight gain more & could see the swelling everywhere, but mostly in her face. Every morning a nurse comes in to give Abi her shot, & then she checks her blood pressure, oxygen levels, heart, heart rate, lungs, weight, temperature, & so on. One particular day, we were getting Abi's weight. She had gained over 2 pounds in a day!!! That is pretty quick. And you could see those 2 pounds in her face. Poor little Abi, but what a trooper. Her blood pressure had risen & her respiration's were fast. That Saturday she had had a spasm that lasted over 30 minutes. It so very frustrating & took everything in me to not give up, & to keep going on with the treatment. Thank goodness for the priesthood & for our families. The same night Abi had the 30 minute spasm, my dad & little brother were able to come over & give Abi (Dave was at work) a blessing. She was extremely fussy & couldn't get comfortable. I was hanging on by a thread. What a beautiful blessing my dad gave her. The spirit was very strong. Abi sat very still through the entire prayer, & as soon as it was over, she was calm & fell asleep in my moms arms. A testimony builder of prayer!!!

Week 4 (February 7 - February 13) *60 units/ml*:
Started the taper of the ACTH. There wasn't much of a change. Everything was still the same. Still not happy. She still had high blood pressure & her respiration's were still fast.

Week 5 (February 14 - February 20) *50 units/ml*: The morning of this week I awoke to Abi coughing. This concerned me because the cough was pretty tight & I could tell it was affecting her breathing. So when the nurse came she checked her vitals & noticed her blood pressure was at the highest it has been since we've been on the treatment, 112/60, & her heart beats per minute were up to 184. This really concerned Dave & I. She began to listen to her lungs and could hear "Rails". She told us to really keep an eye on her & if she proceeded to get worse, to call. Well, she didn't act too much worse the rest of the day. But by night, another story. I was up with her & Lyvie all the way up until Dave got home from work, which is 4 a.m. When the nurse came Sunday morning, I knew something wasn't right with Abi. Her blood pressure was still high, but not as high as the day before. I ended up calling the nurse twice that night to see what I should do because Abi was really wheezy & breathing heavily. She cried most the day & did not handle laying down at all. My mom talked some sense into me, & I broke down & asked Dave's family to come give her another blessing. Thanks Dirk & Uncle Jim. Family is awesome!!! I took her outside a few times to help her out, & it helped, but not for long. So at about midnight I decided to take her over to the hospital. After 2 breathing treatments, a nose swab, & chest x-ray... the Dr. confirmed she has RSV!!! WHAT? I am handling it better than I thought. I just hope and pray that she gets better, before it gets worse. I do NOT want to hear she has pneumonia. Dave took the day off, & thank goodness he did. We are both worn out, but glad to have each other & help each other. As of now, Abi is asleep & doing okay. Lyvie is still up crying & running a fever. I do hope they both get better soon. It is no fun to have sick kids. Hopefully the rest of the week things will start looking up for the girls, and their health. I hope to talk to Dr. L tomorrow, since they were out of the office today. We have about 4 more weeks to go with the ACTH, & then hopefully we'll see a big improvement. We have seen improvements. The spasms are nowhere as long as they used to be. And maybe we won't see a change until she's off of the treatments completely. Dr. L. said where her body is under a lot of stress & change, that can definitely bring on the spasms. So, we'll really have to wait and see what it will be like once she's completely off of the ACTH.

I just want to thank everyone who have prayed for us, & especially for Abi. Please keep praying for her ( and for Lyvie). We do feel your prayers. We know the Lord's hand is in all things. We feel his love & are comforted to have the knowledge that we do. I am grateful for my family & for our trials. We just hit the year mark (Valentines Day) when Abi was diagnosed with Aicardi Syndrome. I can't believe it's been a year. We sure have learned a lot!!! I've said this before, & I will say it over & over again, but I have learned more compassion & unconditional love then I ever thought was possible. I've learned I need to swallow my pride & kneel down & thank my Heavenly Father for everything that we have & for the trials we are faced with. Without Him, nothing is possible. I LOVE the gospel. Thank you to our family and friends for the dinners & goodies you have brought over. It's been a hard thing for me to accept help, but I am humbled. We love you all!
P.S. I apologize for this long post. If you made it through, AWESOME!!!

Friday, December 19, 2008

Our Visit with the Doctor

As some of you know, we made and appointment to see a Pediatric Neurologist in Dallas, Texas for a second opinion on Abigayle. How we found him is a blessing. There are angels everywhere, & I like to think that Mike & Tracy, and their daughter, Maddy, are our angels. Thanks to them, we were able to get an appointment with a Pediatric Neurologist who specializes in Infantile Spasms & has more experience with Aicardi Syndrome and the females who have it. So this past Sunday, we packed our bags, filled our car & traveled 3 days to get to our destination. We have had an eventful trip & are glad we have made it here safe and sound.
Yesterday was Abi's appointment. Dave & I were both so anxious to meet Dr. E & to get his opinion on things. The appointment went well. We spent 2 full hours with the Dr. & he was able to answer questions that we have needed answers to. He was able to help us understand the medications better & give his insight on what he thinks will work best for Abi. As for her seizures, she is having seizures, but she is not having them daily like her Infantile Spasms. She is still having Infantile Spasms. Abi had a spasm while we were there & he had no doubt that that is what it was. He said that all the medications she is on (besides the Vigabatrin) is doing her no good. They are for seizures, not spasms. If it hasn't taken away the spasm by now, then it is not going to take it away later. He really is pushing to get her off of all of them. We will keep her on just one seizure medicine, since she does have a seizure every now and again. He said that there are only 2 kinds of treatments that help get rid of the spasms, & that is either a Steroid or Hormone treatment. The ACTH injection was brought up. You may remember, this was our worst nightmare at the beginning. We were set on NEVER giving this treatment to Abi. The side effects were horrible & the chance of the spasms coming back after the treatment was more common than not. This treatment was out of the question. But, Dr. E. helped us be more mindful of the ACTH & told us he likes to do a high dose & short term. Instead of a high dose & long term. He said you won't see all the side effects that you would if she were to be on the steroid for long term. The only thing we'll see is the irritability. But that should only last a week, cause the 2nd week she will start coming off of the treatment. If this treatment works, Abi could be spasm free. If not, then she will eventually grow out of them by age 3 or 4, but most likely will grow into having adult seizures.
Dr. E also wants Abi to have another MRI. Her first & only MRI she had was not the best of quality. And the dictation on it was not as clear as it should be. We learned that there is more going on in Abi's brain than just her missing her Corpus Callosum.
This probably doesn't mean anything to any of you. Or in any case, is boring. That's okay. I've said before, this blog is for my records. My journal. I need to write these things down, so I can someday go back & hopefully see the changes & progress we have made.
I just hope that Dr. E. doesn't think Dr. L is an idiot. He does not have the experience that Dr. E has. Dr. L told us to bring home as much information as we can so that he can be aware of this condition & better help his patients. Dr. E is going to write Dr. L a letter of the important things we talked about & hopefully help him understand the Infantile Spasms better & also Aicardi Syndrome. I don't want anyone to think that we think Dr. L is not helping us. He is! He is an amazing Neurologist & we couldn't have asked for better. He is so willing to help us out in any way that he can, & when we told him we were going to Texas for a second opinion, he was just as excited as we were.
We are so grateful for this opportunity. We are extremely grateful for doctors & medicine, & technology. I can't imagine us living in any other time than now. We truly are blessed with so much! I am grateful to all those out there that have a daughter with Aicardi Syndrome. And to those I have come to know through emails, blogs, & websites. It has been a blessing to communicate with families who are in the same situation we are. But I am also grateful for all the families who have a child with special needs. Abi has taught us so much! She is such a joy in our home (along with Lyvie)! She has taught us to have more compassion than ever can be imagined. Along with patience, love, & a desire to do better each day. She is an angel. We love our girls more than anything in this world. I cannot even begin to imagine not having them in my life. I am grateful for the knowledge that I have of eternal families. 2 songs that touch my heart every time they are sang are: I Am a Child of God & Families Can Be Together Forever. Those songs are true. They are a testimony to me. I love my family so much! I love the Gospel! It's been a very emotional time for us, but we are grateful to have this chance & to reflect on life itself & why we are here. Remember how important life is. Life is a privilege. We should make the most of it & not take advantage of any second that goes by. Thank you to everyone who has prayed for us & especially for our Abi. We feel the prayers. We love you all!

Wednesday, December 17, 2008

Look what Abi's doing!



Make photo slide shows at www.OneTrueMedia.com
(Sorry for the quality of this video. Dave took it with his cell phone)
Abi is now picking up finger foods & putting them in her mouth. We've been working with her with this for a long time. Thanks to her "Occupational Therapist" & the positive feedback we get from her. This is something so exciting for us, & reminds us how amazing life is & everything we can do, is such a blessing! Good Job Abba Dabba! We are so proud of all your accomplishments & the milestones you are making. We Love You!

Monday, October 13, 2008

:PeRFeCT:

Dave is taking a poetry class this semester & has had the opportunity to let his mind wander & write whatever he would like down on paper. This poem in particular has been very special to me. When I read this for the first time, I cried. And still when I read it, I cry. He's extremely talented & I'm grateful that he went with his feelings & wrote this poem.


:PERFECT:

Tiny hands grasp my right index finger,
Sparkling blue eyes gaze

Seeing something hidden from me.

Auburn curls frame your crooked little smile

Perfect.


Your eyes shake, squint and cringe
Body folds in half at the waist.

Tears roll down your cheeks,

As chaos engulfs us all.

MRI reveals a secret you hide,
Your mind is missing pieces.

Eyes tell a story that allows us to see,
You are different.

But Perfect.

Watching you struggle, working
To accomplish
what others can do already.

Strength grows, tears fall and
Hope is blossomed from your smile.

Perfect.



Update on Abi:
She is still having seizures daily & we've even added a new medicine. Keppra. So far it hasn't helped, which is a bummer. We also scheduled her an appointment with a Pediatric Neurologist in Dallas Texas for December 18th. So we will be spending Christmas in Texas. We are anxiously awaiting this appointment & of coarse staying with Jay & Tita, & their family. Hopefully we'll find some answers that we've been looking for. Until then, we'll just continue to give Abi the best care she needs & pray that these seizures will stop.