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.
Monday, August 31, 2009
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, July 19, 2009
Monday, June 22, 2009
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.
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.AND
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**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!!!
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