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.
