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.