The Next Step

Aly had her follow up appointment with her neurologist on Tuesday. Dr. Betsy said her EEG was normal. She checked Aly's reflexes and muscle tone and said they looked good. She was surprised how different Aly looked just 4 months later. Dr. Betsy gave us the green light to begin taking Aly off her seizure medicine. We will slowly taper down the dose from 7ml to 5ml to 2.5 and then nothing. I have been hoping to be able to do this for a long time. The phenobarbital has been very good, she has not had any seizures since she left the hospital, and we haven't noticed any side effects from it, but the Doctor says it can cause cognitive and behavioral problems with long term use. We also were given some doses of Ativan we can give her in case she has a seizure longer than 5 minutes. I am hoping she doesn't have any more, but we were warned that she will always be susceptible to seizures especially when she is sick or has a fever.

Every time we see Dr. Betsy she seems so amazed that Aly is doing so well. Without saying the words, she has pretty much implied that Aly shouldn't be doing this good. Which is great, but also leads me to think when's the other shoe gonna drop?

Aly wearing her special "Three Little Birds" onesie for good luck

Aly is still seeing her PT and OT once a month each, and seeing EI 2x a month. She is not walking yet, but stands unassisted when distracted, and is getting better with her hands. She's not talking though and not saying Da like she used to. Pretty much as soon as she started crawling, she stopped talking, which her therapists say can be normal, but I wish she would start again.

Aly is doing really well in physical therapy, and should be able to stop going once she starts walking. No idea when she will stop with the other things. I believe she will qualify for Early Intervention until age 2 and may also qualify for vision therapy. As grateful as I am for all this, I sometimes feel like is this how it will always be? Just a revolving door of therapy visits and doctor appointments? Can we ever just let Aly do it on her own?

That being said, I love my little girl and am amazed at her every day. She has the cutest laugh and best smile. She brings so much love to my life, and I am so thankful she is here with me. She is a miracle through and through. She doesn't make me think of the fear and doubt and anger I felt while she was in the hospital, she only reminds me of how many people came out of the woodwork to love her when she needed it the most. She made me gain more faith in people.

One of my friends from work recently had twin baby boys, and they are currently in the NICU at two different hospitals, and one of the babies just had open heart surgery. I am glad to see people are rallying behind them strongly. Primary's makes miracles, my baby girl is proof of that. I feel so strongly for them, and I know everything they are going through must be even harder because it's two fold, and being pulled in two separate directions. I will be cheering for their babies and wishing them the best.

GO ALY!

(and GO LANE & WILL!)