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

Photo and video editing at www.OneTrueMedia.com

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!

Photo and video editing at www.OneTrueMedia.com

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.