Water Retention

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

AND

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

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

Long time....

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

:ACTH & RSV:

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

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

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

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

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

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

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