06/18/2026
Update 6/17/26: Hi everyone. Wanted to give you all an update on our little Miss Angelica. Last week Wednesday 6/10, Angelica started a fever that evening and a runny nose. This was the first illness since reducing her Phenobarbital level back on 5/23 from 8.8mL to 8mL. On Friday 6/12, at around 2am Angelica woke up screaming and when James and I got into her room she was shaking, crying/screaming, and clinching her eyes closed. We figured the shaking was more shivering due to her fever which at the time reached 101 degrees. Nothing we did would console her so I turned the light on and tried to open her eyes and noticed they were trying to deviate to the right which is her first indication of a seizure. I am not going to lie, I panicked. I kept going back and forth on if it was a full seizure in need of her rescue medication or not and in the end, we decided to wait a few minutes and then her eyes stopped, she started to calm down and then was responding to use with normal eye movements. I slept with her after that for the next few days to keep her on ice and we were giving Tylenol every 6 hours since Wednesday night to combat the fever spikes. We also started to sick plan medication Thursday night which I’m sure also helped the Friday morning episode. Friday and Saturday she was really tired and very weak. Struggling to sit up by herself and use weight on her arms. By Sunday she stated to be more herself. Nose drainage was still high so we continued with her modified bottles of half water half formula to make it easier on her stomach and to orally eat. As of today, 6/17, she is almost back to herself. Her fever is finally gone but sometimes spikes in the evening after a long day of play and therapy. Still eating modified bottles of now 2oz water to 4oz formula and eating some table foods again but not a lot. Each day she is getting better but this was a pretty big scare for us and also a win as she was still able to avoid going into the hospital! We have been in contact with her neurologist during this whole process and finally decided yesterday that we should go back to her normal dose of 8.8mL of her Phenobarbital. Seems like Angelica might not be ready to ween off this medication yet. We will continue to keep her healthy and work with the doctors to see what we want to do from here but right now, we feel she is telling us, it is too soon for touching medications.
Last week Angelica also developed either a pimple or boil on her chest/belly area. I drained this at least two times and last Friday, we had her checked by a pediatrician who said it was in the process of healing and we should be good to go. It did seem that way until Sunday when it seemed to be “filling” or “growing” again. Tuesday, 6/16, I drained it again after her bath and it was really painful and bleeding pretty good after. We are continuing to monitor this too and see what is going on but plan to clean it up with some peroxide today and try to dry it out and get this fixed to help reduce her having one more problem right now.
Angelia is now finally into her new orthotics which are made of a thicker material and they seem to be allowing her to use her legs better when in her gait trainer. New pictures below showing her continued improvement of strengthening her legs and walking ability! (video will be posted separately)
We also did go to the Paw Patrol event at the National Railroad Museum this weekend too and the girls both enjoyed themselves and getting some fresh air!
Angelica will also start swim lessons in July with me! She will be going at the same time as her sister and it is a parent toddler class for kids ages 2-4. This will allow me the ability to introduce her into the pool and water which we know she loves due to bathtime! I also have her on the waitlist now at the CP Aquatics Center too for private lessons when that comes available as well! For now, the parent child class should be good for her to start and she can also go with her sister then and they can enjoy lessons together!
We continue to make progress on our basement for the girls to have a big play room for them and their toys. Our goal is to have this done before winter this year so Angelica would be able to use her gait trainer at home down there as well during the cold season.
We will continue to keep you all updated on Angelica’s progress and improvements. We thank all our family support and friends to continue to help us in all aspects of our life to keep moving forward as a family and remaining stable! Thanks for all the love and support!
