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!

Look what Abi's doing!

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(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!

: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.

24 Hour EEG Results:

On Friday, Dr. L called me with the results on Abigayle's 23 hour EEG. I don't know if I would call them results. They're more like a "mystery" if you ask me.
They found nothing! From the results of the test, it is showing NO seizure activity. I was extremely surprised by the results & am a bit frustrated. What we "thought" were seizures are not showing up as seizures. He did say she was having some misfires, but the times we pushed the button for the seizures, were nothing. Dave & I, along with Dr. L are so confused. He is unsure what is causing her eyes to do all the things they do, but wonders if we should go see her Ophthalmologist. I don't understand cause there were a few times that Abi would do the full on crunch & her eyes would look to the right (Partial Complex is what we were told before), and then her eyes would bounce or she would do the winking thing with her left eye. But they don't show up as seizures. WHAT??? I don't know what to think anymore. I am completely at a loss for words. I didn't even want to blog about this news, because it is so upsetting. Dave's dad said to me the other day, "Maybe she's tricking us." ha ha. It does not make any sense. Yes, what a blessing it is to hear that she is no longer having infantile spasms or seizures, but for some reason I do not believe that answer & will not accept the results until we find the "TRUE" reason for Abi's seizures. {Yes, I am going to call them seizures because #1 I do believe they ARE seizures, & #2 there is no other reason not to call them something different}. What is this new thing her eyes are doing? And when her eyes are doing these things, her breathing is labored, sometimes her eyes will water, & sometimes she is non responsive... all signs of a seizure!!! Now my other concern is, is the medication making her eyes worse and causing this to happen??? Or is it some type of tic she has picked up? Dr. L had a second Dr. look at the EEG results & he couldn't make out what to think of it either. They saw what we journaled while the tests was being performed. They saw how Abi's body would tense up & scrunch; saw her labored breathing, & saw her eyes do the things they did. How could the test not show up that anything was going on? Dr. L said he would review the video again, & call Abi's Ophthalmologists to get her in to see him. He also said he would do some more research on Aicardi Syndrome & on the medicines she is taking to see if these are side effects.
Am I wrong if I request another 24 hour EEG test to be done? Am I wrong to get a second opinion from another Dr? I am not mad or think less of Dr. L. He is just as frustrated as we are & wants to find the real reason for Abi's test results.
Since Abi was diagnosed with Aicardi Syndrome, we've had a father whose daughter has AS, email us. He keeps in contact with me & is very kind with his words of encouragement & support. It has been such a blessing to have contact with someone who has been through this with their own daughter. He & his family live in Texas. And there is a doctor in Dallas who is one of the top authorities in Aicardi Syndrome & has led many research projects for this disorder. We have talked about going down there to see him many times, but have never been for sure on it... until now. Dave & I really feel like we need a second opinion, & thought that he is somebody who can help us. As soon as I hear back from Dr. L, I hope to set up an appointment with Dr. E in Texas. Much thanks to Mike!!!
So there you have it, the results, or "mysteries" of Abi's EEG. For now we are at a stand still, but I know that there are answers, just not sure when we'll get them. Please pray for the Doctors & for Abigayle. We know there is something that the Lord is trying to teach us.

24 Hour EEG

Friday, we headed down to Primary Children's for Abigayle's "BIG" 24 hour Video EEG. The nurses were quick with getting the electrodes placed & having her head wrapped so we could get going with the testing. Abi cooperated really well, & we were able to catch all 4 different types of seizures (I think). I was a bit surprised at how many seizures Abi had while we were down there. When she would have a seizure we would push a button and then write down the date, time started & time ended of the seizures. Also we had to describe what her seizures looked like. She had a total of 6 seizures during her testing that we seen or caught. (She could have easily had more during the night or ones that were absent & we didn't notice.) If you count how many she had Friday morning before the test, & then the time she spent testing, along with Saturday after the test, Abi had a whopping 10 seizures!!! I am shocked! I have not seen Abi have over 3 seizure a day in such a long time. And for her to be totaling 5 a day, is frustrating. Today I have not seen her have a single one. It would be nice for her to be seizure free! One day that will happen! We will get the results from Dr. L by the end of the week. Hopefully by then, we can figure out what is going on in her little head & somehow find the medication to help stop the seizures. We took quite a few pictures of our long & eventful days spent down at Primary Children's. (Really it was boring.) But we are glad that Abi cooperated & had a successful testing experience!

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***Abi just started to do this with her tongue. She watches us do it, & then she does it. It's so fun to watch her do these silly things. She also started giving kisses this week!***

What's going on with Abi?

As some of you have asked...how is Abigayle doing? I thought it was time to post a little update on her. Things with Abi have definitely been exciting & frustrating. To start out, Dr. L had increased Abi's dose some more about a month ago, because she was still having 1 seizure a day. The increased dose seemed to help & Abi was seizure free for 5 DAYS!!! She then had gone back to having 1 a day, and we increased her dose again. Again, it helped & she went 3 days without having a seizure. The seizures came back 2 Sundays ago, and have increased in number from 1 to about 2-3 a day. I am a bit frustrated to see her have more than 1 seizure a day. It seemed like things were going good when we were down to 1. With her seizures coming back & increasing by number so are different types of seizures. The type of seizure Abi has is called {Partial Complex Seizures}. So on top of those I feel like she is having Absent seizures, which the only way I can tell is her breathing gets heavy & she has a blank look about her. She also is having a seizure that her left eye will slowly close and sometimes she does not respond but other times, she responds. I feel like these are her old Infantile Spasms that have come back.... YUCK!!! It makes me sick to think about. Most of the time she doesn't act bothered, but there are the few times she is. After she has a seizure, she is of coarse exhausted & falls asleep for about an hour or so. She also has had a few where her eyes will bounce... I call them her "crazy eyes". She's only had 2 or 3 of those. I get so bummed out when I see her have a seizure, but when I see a new one on top of the regular seizure she has, then I find myself depressed and scared for the unknown. This past week Abi has been sick with a horrible cold. I did not know your nose could produce that much snot. Poor Abi has such a raw nose now & is still trying to get rid of the cold. On Wednesday, Abi's worst day, she ran a low grade fever & had 2 REALLY strong seizures. This seizure was the kind where her whole body shook & her eyes rolled in the back of her head. We have never seen her have this type & so, to see it, Dave & I were a bit shaken up. She seized for about 1-2 minutes & then took about 30 seconds for her to come to, when she came to, she acted like nothing happened. But then 30 seconds later, she went back into another seizure. I immediately called her Neurologist, & was told that being sick & running a fever can definitely bring on seizures. We are hoping that those seizures will NEVER come back. Abi is still sick, & I am afraid she might have strep throat. Lyvie is just getting over strep, so it wouldn't surprise me if she caught it. So, I will call the Dr. tomorrow & hopefully get her on an antibiotic.
On a happier note. Abi can sit on her own. Dave & I no longer hover her when she is sitting. We can leave the room, & come back to find her in the same position! And, this past Tuesday, I was in my bathroom doing my hair, while Abi was laying on the bedroom floor, I heard her grunt. So I looked down, & she had rolled to her belly! Great Job Abi!!! She has rolled a few times now & each time I see her do it, I can't help but smile! She is slowly rolling, but with each day, she'll get better & faster at it. Her Physical Therapist came this past week and complimented on how much stronger she is. Her legs are so strong, & she seems to enjoy being on her feet. She also is rolling to her side & reaching for toys. And, bringing BOTH hands together. These things may be little for some, but to us, they are huge milestones. We don't take them for granted. They are great accomplishments & we are so pleased!!!
This coming Friday, we are taking Abi down to Primary Children's to have a 24 Hours EEG Test done. The reason why Abi is having this done is due to all the types of seizures she is having. Dr. L & I felt like it was the right thing to do, before we made another increase in her medication. Hopefully they will find what they are looking for and be able to fix or treat the seizures. Thank you everyone for your thoughtfulness & for your prayers. We couldn't thank you enough!

The Steed Family

Friday night, while we were at the fair, we ran into Dave's sister, Karen. She was holding Abi & the next thing we knew we lost them. When we found Karen, we didn't find Abi in her arms like before, but to the side of her was a man that neither Dave nor I recognized, & he was holding our Abi. Watching him with Abi was one of the sweetest moments I have ever seen. He was so gentle & so tender with her. Come to find out this man was Jardee Steed. His name you might not know, but his name... along with his sweet wife, Bobbie, are the names that we have learned about through Abi's "former" Physical Therapist. Jardee & Bobbie were blessed with a sweet & very special little boy named, Tagg. We learned about this family due to the same issues that Abi has been facing...seizures & developmental delays. Dave has talked to Bobbie on the phone concerning some past medications we were deciding on for Abi, & it was her that helped us make an important decision. Tagg not only suffers from seizures, but he also is delayed in his development, just like Abi! This little boy has what is called Heterotopia, <--(click to learn more) which makes him have seizures. My heart is so full with gratitude to this family! I have never in my life felt so close to someone as I do with this family! Abi meeting this family was priceless. She beamed! It was like she was reunited with some of her best friends. She was so happy & it didn't take any warming up for her to the Steeds. She was absolutely content with Jardee & Bobbie. Full of smiles & noises!!! We didn't get to meet Tagg Friday night. But Saturday, while I was there with the girls, Jardee, Bobbie, their girls, & Tagg were all there. I was so excited to FINALLY meet this sweet & handsome little boy! I immediately fell in love with him!!! He is absolutely adorable!!! I also was excited for Abi & Tagg to meet too! They were so cute with each other! They have some of the same similarities. The crooked smile, their eyes look the same, the way they move their hands, and so on. My heart is so full with love for my Heavenly Father & for him sending this sweet angel to our home! And also for us finally meeting the Steeds. These people will be forever friends, and hold a very special place in my heart.  I know Tagg & Abi don't have the same disorder, but there is a connection. I am so grateful for The Steeds! We are looking forward to getting together with them & getting to know their family even better!!! Thank you Karen for introducing us to the family we've been waiting to meet.

Jardee & Abi, Me & Tag

Grandpa Richards

I thought this picture was so stinkin' cute!

I Love You Papa Richards!

You mean the world to me!!! 

HaPPY 1st BiRTHDaY!

I cannot believe it's already been a year since our little Abigayle was born. What a year!!! I was pretty emotional the night before & day of Abi's birthday. I even set my alarm on my phone for 2:26 AM to wish Abi a Happy 1st Birthday! It has been a "bitter-sweet" experience for me & I am so grateful for Abigayle and all that she has brought into our lives in the past year. Yes, we have had a lot of challenges & experiences that I would wish that no one will ever have to experience as a parent with their child. But, we also have had a year that has been very rewarding and very humbling that I would never ask to be taken back. We are looking forward to many, Many, MANY more birthdays with her! Here are some fun pictures on her special day!

We Love You Abba-Dabba, & we are so proud of all that you have accomplished in your first year!

Haircutting Time!

BEFORE

AFTER

It was finally time to cut Abi's hair. This is not the first time I have cut her hair, but the THIRD time! When I cut it, I couldn't believe how curly her hair went. She has a bit of natural curl to it, but who knew this much!!!

The THREE Amigos!

BEST BUDS!!!
Abi, Emi, & Hunter

Abi Update

Just a quick update on Abi. She is doing FANTASTIC! We had a visit with her Neurologist last week & he couldn't stop telling us what an amazing little girl we have! She is doing incredibly well! She is vocalizing more. She says: "Dada" & "Hi", & also waves!!! She also is doing great developmentally. She regressed a little after I posted the videos of her saying Dada & rolling, but she is back to doing those things & also doing more. She is so vocal. She wakes us up very early in the morning by just jabbering away. I think she has found her voice!!! She also is scooting around on her back by pushing off with her feet. She went a whopping 5 days seizure FREE!!! But now is down to 1 every other day. Hopefully this last increase of her Vigabatrin will stop her seizures all together. She is doing well in her Physical Therapy & we couldn't thank the Up-To-3 Program enough. We also had a Swallow Study done to see if Abi is aspirating. The news: She's not!!!! Whew!!! She has a really bad case of acid reflux. But we're not out of the woods yet. We still need to watch her & if there are any suspicions of her aspirating, then to let them know. We go in for a follow up in 6 months.
We are so grateful for all the positive feedback we have received from the Doctors. I know that our prayers & your prayers have helped tremendously!!!

JuMPiNG

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Look what Abi is doing!

:Happening in June:

Abi cut 4 teeth at the beginning of the month. They all came in the first weekend in June. Her top front tooth came in, following with a bottom front tooth. And then the next day, another top front was in, along with the other bottom front. Now she is working on 2 more top teeth. Pretty soon she'll have a mouthful of TEETH!
We took Abi to see Dr. L, her Neurologist the second week in June. She wasn't supposed to have an appointment, but the first Sunday, Abi had a horrible day. She had had 6 seizures by 11 am that morning & then 1 later in the evening. This concerned Dave & I. Normally she was only having 2-3 a day. We got her into the Dr. that following Tuesday because she still wasn't doing any better. We had another EEG performed and Dr. L explained to us what was going on with our little Miss. The good news is her Infantile Spasms are under control. They didn't show up on the EEG. The Dr. believes that the Vigabatrin is doing its job, and that is what is controlling her Infantile Spams. We are so excited for this news! The bad news is that she is experiencing what is called Partial Complex Seizures. We knew that her 'spells' had changed and kind of felt like they were the seizures instead of the spasms. So he increased her dose on the Topamax & we hope that it will soon control her seizures. So far, it has helped, but she is still having about 1 or 2 a day.
As for her development, she is doing awesome!!! She started saying "Da-Da" on Fathers Day. It's the cutest thing ever!!! Along with her vocalizing more, she also has almost accomplished rolling. She can roll to her side, almost belly, but can't figure out to move her arm.
Her Physical Therapy is going well. She had PT a few weeks ago, and it was very informative. We got a new PT & she gave us some more exercises to do with her & stretches for her muscles. She is a little concerned that Abi might have what is called Torticollis <--click to read about). So we are doing stretches with her to get her neck muscles working properly. Also she thinks she is aspirating when she eats. We have to prop her up to where she is sitting fully up while feeding her a bottle and feeding her solids. Also we prop her while she sleeps. We will be having a Occupational Therapist come out to see her and evaluate her. Hopefully they'll help her with her feedings and figure out what we need to do so this no longer happens. She most likely will have a swallow test to see if she is for sure aspirating. It doesn't come as a surprise to us as I thought it would, & I think it's because these girls with Aicardi Syndrome are known for aspirating. We just want to get it under control so she doesn't get all that fluid in her lungs and cause her to get sick. That is one of the reasons her condition is fatal, because of the aspirating part. So we are doing all that we can do to help her to not choke while she eats or sleeps.
Abi is such a joy in our home. We are focusing more and more on the joys of Abi daily, instead of focusing on the uncertainty of tomorrow. We are living in the moment. Enjoying every day together. It's amazing to me how the little things I used to take for granted, before Abigayle, are now so precious to me! We KNOW the Lord is with us! We have been truly blessed by this sweet angel in our home. We feel our Saviors love all the time!!! I do not know where we would be if we didn't have the gospel in our lives. His love, along with everyone else has brought us so much peace and comfort! We feel your prayers. Thank you all for continuing to keep our little Abi in your prayers. She is a miracle!

Da Da!

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Abi started saying "Da Da" on Fathers Day!!! What an awesome word to hear her say & on such a perfect day!!!
She amazes us every day!

Rolling

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Abi has almost conquered rolling from her back to tummy! If she can just get that arm underneath her to move just a bit. This is so exciting to see!!!
Pretty soon she'll be our rolling machine...

Results

Abi is doing well...

Since the last post, Abi's EEG results showed that she still is having Infantile Spams, but they aren't as patterned as IS usually are. On top of that, she is also having what looks to be Partial Complex Seizures (that would explain her 2 seizure episodes). So, Dr L increased her dosage 2 more times since the the last post and she is now taking 400mg of the Vigabatrin 2x a day. Dave & I both feel like it is working. Although she is still having her 'episodes', they have decreased to anywhere from 1 to 3 a day. The new dosage has made Abi sleepier, but it's a side affect, and once her little body gets used to the new dosage she should be back to normal. I am supposed to call sometime this week & let Dr. L know how Abi is doing & also let him know if her 'episodes' have decreased. Our main goal is to get her IS/seizures under control. Until then, we will continue to experiment with the medication. It's pretty much trial and error.
I wish so bad that I could take away Abi's disease. Some days are harder than others. But most days get easier. Does that make sense? I am so extremely grateful for my family... especially Dave. He is my rock. When I am having a hard day, and ready to give up, that's when Dave comes to my rescue. We never seem to have bad days together. If I'm down, he's up. And when he's down, I'm up. I'm pretty sure the Lord made it that way. I am grateful for our immediate families & also our extended families. We could not get through this alone. And I cannot forget all of our friends!!! I once heard a saying that says "It takes a village to raise a child." And to all of you... THANK YOU! Each one of you have helped our family. It does take a village, to help with a family, to raise a child and to weather the storms of life...

We have been truly blessed.

Sitting Up!

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Another Update

Things are looking up for her. She has been on the Vigabatrin for almost a month now. Although she is still having spasms, we have seen a great improvement in her developing skills. She now can sit up ON HER OWN; She is progressing well with pushing up on her arms while she is on her belly; she is vocalizing A LOT now... infact, the other night we swear she said, "DaDa"...It was so clear and so cute!!! She is also grabbing for things more now, and seems to be using her left side a little bit more than she used to. It's like she is a new person! She is so happy. The fog has been lifted for her. She has had 2 episodes where she has seized. They don't last long, but it is a concern for us. With the medicine we are trying to get her spasms/seizures under control. We had a visit with her Neurologist & Ophthalmologist last week and her Neurologist performed another EEG on her to see what is going on with her spasms/seizures. I will be finding out the results to the test today, and will post later about them. She is still on the Topamax and we are working up to a new dosage of 250mg on Saturday with her Vigabatrin. If we DO NOT see improvement, then we will have to go back to the Dr. sooner than July (our next appointment) to determine what else we can do for her. Her eyesight is still great! Since she is on the Vigabatrin we have to see the Ophthalmologist every 3 months, which is fine by us. She tracks well and seems to have no problems with her vision. We are still taking her condition one day at a time, but with each day, it gets easier. She has been such a blessing and we do feel like miracles have happened for her. We are enjoying every moment of every day with our girls and wouldn't have it any other way.

:Abi update:

(Abi with her cute little wrap on her head to hold all the electrodes in place while getting an EEG)

Since the last posting on Abi, we have seen Abi's Neurologist twice. The first visit they performed another EEG to determine if her seizures were still Infantile Spasms <-- click here to read about them), or if they have become seizures. Her EEG showed that they are infantile spasms, but modified...whatever that means. Dr. Lloyd put her on another medicine called Topamax and also told us he wanted to start her on a 6 week treatment of ACTH <-- click here to find out what ACTH is. At that point I had read a little about ACTH and was not that impressed by the medicine. But the more he talked to us about it, the more we felt okay with doing this treatment. So, we agreed & were to go home and wait for a call from the nurse who would be over in the next week or so and start her on her injections of the ACTH. Later in the evening I started researching more about ACTH and as I researched I found nothing good about this drug. The whole drug seemed to have no positive about it. Yes, maybe it would slow down or even stop Abi's seizures, but more times than none, as soon as the treatment is over with, the seizures come back. And the side effects are horrible. Water retention, mainly in the face; increased appetite; irritability; sleepless nights; low immune system; high blood pressure...and the mother of all....Heart Failure!!! WOW! Was I upset! Why didn't the doctor tell us ALL of the side effects. Instead, he only mentioned some. So when Dave called home while on his lunch break at work, I told him of what I had read & how I DID NOT want Abi to get the treatments. To me, it seemed like such a pointless drug, why put her through something so intense, and then after she is through with the treatments, see her seizures come back. That is pure misery to me! So the next few days, Dave & I researched some more, prayed, attended the Temple, and prayed some more. We decided AGAINST the ACTH & decided to go with a drug called Vigabatrin (Sabril)<-- click to read about this drug. Vigabatrin is not FDA approved, so therefore we cannot get it in the United States. It is ordered out of Canada or Mexico. One side effect that we need to be aware of is it can cause vision loss. We'd rather have Abi lose her sight then die at 7 months! But from what I have read, there have been no problems in children losing their eyesight while taking this medicine.
The second visit to Dr. Lloyd was just a follow up. He told us we could take Abi off of the Trileptal by the end of the week and keep her on the Topamax. That, we did!
Anyway, yesterday we received Abi's Vigabatrin. They come in little packets. They look like sugar packets. Now we have to find us a scale that will weigh in milligrams and weigh out her dosages. The only problem with finding a scale that measures in milligrams, is how much the scales cost. They range mostly up into the thousands. YUCK! So, we are still searching for a good scale, but at a lower cost. For now, we are going to see if the pharmacy will be willing to measure out her medicine for us.
And to update you on her other medication that Abi is on: TOPAMAX. She started her full dose of Topamax this week. Her seizures have decreased to 1 - 3 a day and they are much shorter than before, lasting anywhere from maybe one jerk to a seizure lasting up to 10 minutes. Not bad if you ask me! She's much more sleepier than she was before, and she sometimes acts like a zombie. She has regressed a little in her developmental skills. But we had the Up-to-3 workers out here yesterday, and have set some goals that we want to work on with Abi for the next 3 months. If the Vigabatrin starts to work, we can hopefully take her off of the Topamax. It would be nice to see my Abi's bright eyes and smile more often again and to hear her contagious giggle!
Sorry if this post was long and boring to some. But I like to keep an update on Abi for my sake.

Sitting & Tummy Time

Here is a video of Abi attempting to sit up on her own. She is really close and we are so excited for her to accomplish this milestone.

Some pictures of Abi. The first one is of "tummy time". Trying to build the muscle strength in her arms and tummy. The second picture is of Abi sitting up. We are so proud of her!

Acid Reflux, Constipation, Seizures & Up-to-3

These past few weeks Abi has really struggled with her Acid Reflux, and Dave & I have really struggled with figuring out what we can do for her. And on top of that, we all were lacking much needed sleep at the Richards home because of it. Abi has always had AR since she was born, & has been on medication to help it. As time went on, she started doing really well & so we weened her off of the medication. The weekend Abi was diagnosed with Aicardi Syndrome, she was up both Thursday & Friday nights screaming & crying non stop. She was not comfortable & not happy. So I talked to Dr. H. that saturday & told him of what was going on. He said it was her acid reflux & to put her back on her medication, and if it was not better by Tuesday, to give him a call & we would try something else. Well, it seemed to be working, but by the time the next weekend came, we again stayed up all night with her because she was doing the same thing. Dave & I ended up taking her into the ER last Saturday night because she was crying so bad. They looked her over, but could find nothing wrong. They too agreed that it sounded like her acid reflux. So they had us instead of giving her half a tablet of Prevacid a day, to give her the whole thing every day. It worked...but not for long. So, we took her into Dr. H. this past Wednesday, & he gave us some tips on what we can do to help her be more comfortable and help decrease her fussiness and our lack of sleep. We now are giving her half a tablet of Prevacid in the morning & the other half at night. If that seems to not help, we give her some drops that are for stomach cramps or colicky babies. AND, if that doesn't help, we give her Maalox. So far Abi has done pretty well these past 3 nights. We have had to give her the drops & Maalox, but yesterday I skipped giving her the drops & went straight for the Maalox. As soon as she took that, she was calm & slept great! Cross your fingers that this continues to help & we have her AR under control.
As for the constipation (if this makes you ill, then stop reading now), she has also struggled with bowel movements. We have tried Glycerin Suppositories, Miralax, prune juice, fruits & cereals with fibers in them. Since the ER incident, I am happy to say that Abi has had great bowel movements. Whew! Infact, we get really excited when she has a messy diaper, cause we know she is not having constipation issues & she is so happy afterwards, & it less pain for mom & dad trying to figure out what we can do to help. We just feed her prunes or any fruit with lots of fiber in it in the morning and afternoons. This way, she is keeping her bowels comfortable & clean. :0)

The seizure update is that Abi has gone from having 4-7 seizures a day, to anywhere from 1-5 seizures a day. She averages out at 3 a day. To us, it still seems a lot. She has been on a seizure medication called Trileptal for almost a month now {I cannot believe it has already been that long}. We wish we could get her on a medicine that would get rid of them all together. But right now it's "Trial & Error" with what medicines are going to help her. Every time Abi has a seizure, it puts her brain on hold or pause & it sets her back in her development. Although her seizures have decreased in number, they have come to be more intense & last anywhere from 10 minutes to an hour. She has different types of seizures, which have led her neurologist to believe that they might be Infantile Spasms (type of seizure that is found in Aicardi Syndrome). She is behind on a few things, but not very far behind. She does not roll from her back to her belly; she cannot sit up by herself (although, she is very close), she just started grabbing at her toys & this week, she has found her toes & has started grabbing for them. We have started evaluations with the "Up-To-3 Early Intervention Program" from Utah State University. Right now they come out and are evaluating her. The Physical Therapist came out a few weeks ago & evaluated Abi on her Motor Skills. Then this week they will be back over to evaluate her on her health, vision, & hearing, and also her general developmental skills. And then at the end of the month they will come back out & discuss her eligibility & plan goals & services for Abi. If she is eligible, then they will start working with her in the areas she needs to work on. We are so excited for this program!

We go back to Primary Children's to speak with the neurologist on Abigayle's diagnosis tomorrow. I am guessing he will tell us of things we need to know and expect about AS & also he will talk more to us about different seizure medications we can try with Abi. Also, he will most likely run another EEG on her to see if her seizures have turned into Infantile Spasms & to see if there is any other activity going on inside her brain. We are prepared for a long & informative day. We hope that we will find some things out that we don't already know, & are hoping for the best tomorrow!

Dave & I just want to thank everyone for all their love, concern, & support. We are truly blessed with such wonderful family & friends! We could not go through this without the support system that we have. Thank you all for everything! We cannot begin to even express how grateful we are for each and every one of you!
Thank you to our Dads, Jared & also, Dave, for having the faith & being so willing to give blessings to Abigayle, Dave & I. Our testimonies have grown tremendously & we are so grateful for the Gospel & for the power of prayer. We have felt the spirit on numerous occasions, & have been forever touched by the peace & comfort we have felt. Thank You! Thank YOU! THANK YOU!!!

Abi & Hunter

I just had to post this picture of Abigayle & her cousin, Hunter.
Aren't they just the cutest little things?

Aicardi Syndrome

Yesterday was an important day for us, Abi had her visit with the Pediatric Ophthalmologist. We showed up a little late, but we were still able to get in and see the doctor. They had to put those drops in Abi's eyes that made them dilate and get huge. We sat there for about an hour or so waiting until we actually had Dr. D come in and examine her eyes. It didn't take very long for him to see what he was looking for. Jayme asked him if he found anything and he said he'd tell us after he wrote some notes. Right then we knew it was what we feared. He dictated a note to Dr. L, the neurologist, and then he hit us with the news. Abigayle was born with Aicardi Syndrome. Even though we knew it was coming it took the wind out of our sails to actually hear it. He allowed us to sit in the room for a moment to be by ourselves. I haven't done my research on this yet, but I know it isn't the greatest news for us. Abi may have some physical set backs, and some other issues we may get to deal with later on, but on the way home from SLC it hit me. We have been blessed with one of the most special of our Heavenly Father's children. She has the opportunity to come here on earth and receive a body, but she won't have to deal with having to overcome the choices between good and evil, because she has already proven it before she was sent to be here with us. I know that even though it may not be how I wanted it to be for her, it is how her Father wanted it to be for us. She is our ANGEL.
Posted By: Dave

Priceless...

I have been sitting here on this darn computer most the night finishing up some Primary work that I have neglected for the past 2 weeks. And, I got thinking about my two beautiful girls and what wonderful blessings they both are in my life. I love them with all of my heart & would do anything for them!
Tonight, I was getting Lyvie & Abi ready for bed, and could not help but take some pictures of them.
I am so grateful for Olyvia. She has so much spunk & personality! Every day I learn something new from her. She has become our "little miss independent", which makes us smile! I love that she wants to try new things. She is an awesome big sister, & wants to help dad & mom out all the time! She loves her "Abi girl", & is always making sure she is taken care of.
Speaking of Abi, I know she's only 6 months old, but these past 6 months we have learned so much from her! I love when she wakes up in the morning (or from a nap) & to see that bright, beautiful smile. Sometimes she acts like she has got so much to tell us. She has such a sweet spirit about her. She loves to cuddle (she got that trait from me), which, Dave & I LOVE to cuddle her back. She also loves Olyvia! Never fail, Lyvie makes her smile & laugh.
Tonight, before taking these pictures, Lyvie was making all sorts of noises & talking in baby talk to her, & Abi thought she was so funny! I wish I would have recorded it. She just laughed & smiled! She has a permanent grin any time Lyv is around!
How I love these little girls! They are my world! I seriously could not imagine life without them. They have brought so much joy into mine & Dave's lives. We are seriously so blessed. And I know with all the stress that has been going on, that the Lord really knows us. We are not alone. We have felt Him numerous of times. Right now, as I type this blog, I feel a sense of peace and comfort. He knows me. He knows Dave. He knows what we can handle. And when times are hard, that is when we really need to lean on each other. Families Are Forever! I am so grateful for that knowledge. We have a long road ahead of us, but we will make the best of it. And we will make each day special. And a day to remember!

Visit to Primary Children's Medical Center

(This is Abi & her Moose the nurses gave her from PCMC. )

We just want to update everyone on our visit to Primary Children's that we went to on Monday. First off, it was a very good experience. Dave & I left there feeling a little more optimistic then we thought we would be. The staff there are amazing! They made us feel like we were the only ones that mattered. They were very thorough with little Abi & so sweet to her. The Neurologist looked over her MRI & did say she was for sure missing her Corpus Callosum, but she could still live a normal life. She would just have to learn differently. They couldn't get all the information from the EEG. They just had the dictation on what they found out about her EEG. They wanted to see the EEG itself, & dumb me, forgot the cd that had all that information on it. So, when Dr. L (the neurologist) came in to see Abi, she was having a seizure. It was good for her to be doing that so he could see exactly what she was doing. He then issued another EEG to be done right there. And usually when Abi has one seizure, she has another within that hour. They got her all prepped for that & we all were able to get a snooze in while the she was testing. And just as the nurse came in to take all the electrodes off of Abi, she started to have another seizure. So, she kept them on & you could see the lines just shoot up every time the seizure would hit. Dr. L was in another room watching on a computer of what was going on. They were able to prescribe her some seizure medication & we were able to get her on them the next day. I just hope & pray that she will grow out of these seizures and not have go through them the rest of her life. They take a lot out of her. I did ask the Dr.'s assistant if they were concerned if she had Aicardi Syndrome. She was surprised that I had known anything about that. I have done my research!!! Anyway, they are concerned, but she said she doesn't match all of the criteria. They want us to set up an eye appointment with the Pediatric Ophthalmologist. What they will do there is look behind her eyes to see if there are any lesions or deformities. This will help determine if it IS Aicardi Syndrome, or IS NOT!!! She said that she doesn't look like she has anything wrong with her, and she doesn't act like she does. They said it is hard to determine if she is behind on anything because every baby is different in developing. The brain does not fully develop until around age 2. So we have got an appointment with the Pediatric Ophthalmologist for Thursday, February 14th. Valentines Day!!! Dave & I are so anxious to get down there & get it over with. We are praying that they find nothing wrong with her eyes. So there is the update on what has gone on so far. I will continue to keep you all posted. Thank you all for all your prayers and concern. Continue to pray for Abigayle. We love you all!

Video of Abi & her seizure

This video, is the first video we ever captured of Abi having a seizure.  We were lucky enough to capture it while we were in the Doctors office at PCMC. 

When it RAINS, it POURS!

Well these last few weeks have been a bit hectic at the Richards home. It all started out with our washer leaking water. So, after 3 weeks of waiting for the man to come fix it, he finally showed up. Anyway, come to find out the hoses were loose on the back of the washer, and the problem was quickly solved.
Then, we ended up taking Abigayle to the Dr. because we have gotten more concerned about her "tics/habits" that she was having. Dave & I both felt that they were more than tics, that they might be seizures. She started having 4 episodes a day & there were 2 different kinds of "episodes" she was having. So we brought it to her pediatricians attention. He was concerned as well, and ended up ordering her to have and EEG & and MRI.
Continuing on with the week, Tuesday, our oven started acting funny & we cannot bake anything. It beeps uncontrollably & we cannot push any buttons. So we have just unplugged it.
Also, early Tuesday morning, & I am talking 3 AM early, I woke up to Lyvie laying in bed with me saying she didn't feel good, & then throwing up the rest of the day. Got to love the pukes. Funny story: When Dave got home from work, which was 4 AM. I was up with Lyvie trying to keep her from throwing up. Anyway, he told me to go back to bed & he would rock her back to sleep. Well Lyvie looked at Dave & said, "I need to spit". And Dave kept saying "What", he couldn't understand what she was saying. And as she continues to tell him she needs to spit, he continues to ask her what she was saying. So I decided to get up & go tell him what she was trying to tell him, and just as I was walking out... Dave hollers at me & tells me...'No more Sprite for Lyvie!' By the time I get out there and get a close look at what is going on, Dave has puke all over his face & it's stringing down his cheek & onto his clothes. If he would have just listened to her the first time when she said she needed to spit, this would not have happened.
Okay, now with Wednesday. We had to be over to Logan Regional Hospital with Abigayle by 7:30 AM. Abi was getting an EEG that day, so she had to go sleep deprived. She only could sleep from midnight to 4 AM. It was so sad! The test only took about 45 minutes and it was painless.
Thursday, we were up at 3 AM & in Logan Regional Hospital by 5:3o AM. Abi had an MRI this day. She had to go fasting and that was very sad. But the saddest was when they had to put an IV in her & put her under conscious sedation. I hated looking at my baby and seeing a blank look stare back at me. She was so helpless. The MRI took longer than told, but that was because Abi's sedative kept wearing off, and then she would start wiggling her toes & kicking off the heart monitor. Every time the Radiologist was about to capture the picture, her head would move & the images would be blurry. So, after many times of adding more sedative in her system, they decided just to up it all the way & she stayed sedated the rest of the time. The Radiologist was so surprised at how many times they had to inject more in her. He said she must have a high metabolism that just burns things off quick. Getting her to come to took about 30-40 minutes. It seemed like forever. And on top of all this, Dave got the flu while we were there. He was so miserable the whole time. I felt bad. So we finally got home about 9 AM. The rest of the day was pretty lazy. Dave spent most the day in bed. And then, I noticed Lyvie has pink eye ... in BOTH eyes! YUCK! So her pediatrician called in a Rx, and she is now taking that. And Abi, poor girl, but what a strong little girl... she has been so groggy & out of it the entire day. We should find out the results of both tests later on today.