Angelica's Journey

09/03/2026

Update 9/2/26: Hi all! It has been a bit since our last update on Miss Angelica and with the school year starting, I thought it would be a good time to update everyone on her progress thus far.

Angelica is now 478 days SEIZURE FREE! (15.5 months) We did believe she has a small breakthrough but this was controlled at home and didn’t require hospitalization or any regression besides a few days for recovery. We continue to hope this continues as we move into “Sick Season” and hopefully avoid illnesses as much as possible.

We had a wonderful, busy summer as a family and it has been nice to have more of a “normalcy” to life. We have been able to do more things as a family without having to leave Angelica out and more for ourselves as well such as mom getting to work out 1-2 days a week and dad starting Tae Kwon Do classes too. Cassidy was doing Tae Kwon Do as well but decided to switch to gymnastics and swimming lessons as the school year starts.

Last week Wednesday, 8/26, Angelica was knocked over by another child at her daycare and ended up splitting the back of her head open and needing two staples. She handles this like a camp and it didn’t really bother her and as for the staples, we didn’t numb her as it would have been another poke and still hurt in the end and honestly, she was more upset by being restrained than the staples being placed themselves LOL 🤣 We will be going in later this week or early next week to get the staples removed and everything is looking good and healing well.

As of the last week of August, Angelica has now finished ALL therapies for now. She will no longer go to the CP center for physical therapy, occupational therapy or speech therapy. Her therapists have said that she is at the point where she is not making progress or cooperating as much in therapy and they believed she was just “burnt out” and needed a break. Right now, we don’t know how long this “break” could be, but if for any reason she would regress or have a breakthrough seizure, we can return at any time.

Angelica did get sick as of last night, 9/1, pretty bad, puking and spiking a fever. Not being able to intake fluids, even pumped, and struggling to keep meds down too. This is unfortunate as she was scheduled to have a surgery on Friday 9/4 to remove a cyst on her belly area that has been present for ~4 months. This surgery is now put on hold and will be rescheduled but definitely not ideal timing. It was a very sleepless night for Mom and Dad and the flash backs of sleep deprivation and seizure breakthroughs are hitting hard. We will get through this illness and reschedule the surgery and hopefully move forward from here. This is the worse Angelica has been sick in a while. Normally she does get a fever and decreased eating but not as bad as last night and normally takes a few days to get rid of it. We will see how this one proceeds. Biggest thing is hydration right now as that is another trigger for her along with illness.

Yesterday, 9/1, was also Angelica’s first day back to 3K for the new school year! Besides her being sick, she actually stayed awake the whole time at 3K which is an improvement but she was just starting to be under the weather and was not as happy to be there as normal. We are excited for her to be back and continue to see how she progresses. She will be physical therapy, occupational therapy, and speech therapy at school during 3K so she is not completely done with ALL therapy. Just her outside CP center therapies. 3K will have her gait trainer at school to allowing her to practice walking just like at daycare. This will also give her more social interactions with other children to hopefully be its own form of therapy and growth for her.

As far as what Angelica is able to do now, she is getting closer to crawling on all fours, pulling herself up/standing by the side of the couch, babbling more, working on more balance and coordination, walking further distances in her gait trainer, and exploring swimming! Over July and August, I did parent and child swim lessons with her and she absolutely love them! She was not really able to follow directions and fully participate with the other kids in her class but she has great instincts and loves to splash and put her face in the water! We won’t be doing swim classes for her during sick season but will start back up around spring/summer next year. We are also looking into private lessons at the CP Aquatics center too which she is currently on the wait list for.

This month we have follow ups with ENT for Angelica’s ear tubes, and in October we have a GI follow up and Neurology follow up as well.

We continue to hope everything goes smoothly through sick season and Angelica continues to thrive and grow. We thank everyone for checking in on us and following along with Angelica’s journey and are blessed to have the family and friends we do.

Here are a few pictures since the last update of our Miss Angelica! Hope you enjoy and we will continue to keep you all updated. Thank you!

06/18/2026

Here is her most updated walking in her gait trainer!

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!

05/29/2026

Here is how Angelica is doing in her gait trainer!

05/29/2026

Update 5/29/26:

Since our last update on May 8th, Angelica’s labs all came back great and are looking good! We had her neurology appointment on May 22nd to see where her medication levels are at, how she is progressing, and how she is doing in everyday life. We reviewed her medications and since she has made it ONE YEAR SEIZURE FREE as of May 12th, 2026, decided that we would start to try weaning down her Phenobarbital seizure medication as this is the main medication we don’t have to have her on long term. This weaning is scary but necessary. We are also weaning her extremely slow. This whole process will take at minimum 9 months to complete. We also have the choice once we have her follow up appointment in October 2026, before sick season, to hold on the weaning until the following spring to try to avoid a seizure breakthrough. We are hoping with weaning this medication, it will allow Angelica to stay awake more in the morning and be more active her in 3K program in the fall as she continues now to attend school. Her last day of 3K was yesterday for this school year and she did great! We hope this continues into the fall.

Angelica’s new orthotics should arrive early June. Her appointment is set for June 9th right now. We also have her gait trainer and trike all set up for outside. Angelica, Cassidy and myself, all took a nice bike ride around the neighborhood. Mom walked to push Angelica in her new trike which she absolutely loved! Being able to see her out in the nice weather and enjoying her time outside and life is one of the most cherished moments I could ever try to describe to someone else. It is an amazing feeling as a parent to be able to support your child to get to this point of happiness! I am still working with the YMCA to sign Angelica up for private swim lessons. Just waiting to hear back from them at this point.

We are currently finishing out basement, now that we actually have time. To allow the girls to have a place for all of their toys and be able to play in their own space. We are hoping to have this finished in the next few months and start enjoying reclaiming our living room for ourselves and the kids to have their own space as well. This has been a project on hold for a few years due to Angelica’s condition but we waited out the storm and now are making strides!

We had a great Memorial Day weekend as a family and enjoyed the weather! We also accumulated a pop-up camper that Dad is really exited to use as a “family”. Mom is hesitant but I’m sure it will be something great to do as a family!

Please enjoy the photos of the girls and I will be posting a few new videos of our little warrior as well as she continues to develop more and more!

We continue to be blessed with A LOT of family and friend support and want you all to know just how much this means to us! For us to now be feeling like we are experiencing a new normal, is an amazing blessing we do not take for granted at all! Thank you for all the love, support, care, and words of encouragement for her!

05/08/2026

Update 5/8/26: Hi all! Heading into Mother’s Day weekend here I wanted to give everyone an update on our little Miss Angelica! 3 weeks ago, on April 21st, Angelica started 3K at Lannoye Elementary School in Pulaski school district! She has a special stroller for her to ride the bus and does great taking the bus to and from 3K! She was borrowing a transportation stroller from the CP center and just got her new PINK transportation stroller delivered this week. The first week was a little rough for transition but we were told by her 3K teacher that she did great! She continues to improve each week and is now excited when the bus arrives to pick her up! She will finish 3K at the end of May and then resume again in the fall. We wanted to get her into this program to see her transition prior to fall and to get use to this change for us as well. (side note: Mom did NOT do well on her first day as she watcher her baby get on the bus!)

On April 23rd, she had her 3-year-old physical and is 30 lbs. and 3ft 1inch tall! She is finally back to the 50th percentile for both height and weight. We have also been getting A LOT of fun toys and equipment for her to enjoy the warm months coming up! We purchased a large bounce house for the Cassidy and Angelica to enjoy. Angelica is able to crawl around the ball pit and can play with the other kids! Her program also purchased a special pediatric swing for her for our swing set since she has out grown the infant swing we have 😊 We finally got her gait trainer (pediatric walker) for at home as well! This can be used outside for her to practice her walking and moving around. We also have a radio flyer trike that was purchased by her program for her that will also have adaptive pedals so her feet can velcro in place. Just as you have seen in her recent videos! This will help her with the motion of pedaling and leading to the walking motion.

Today, we had labs drawn ☹ for her Neurology appointment on May 22nd to see where her medication levels are at so we can start reviewing medication adjustments or switches if needed. We also went to Align Clinic to get her orthotics adjusted and new ones ordered because she has grown a total of 3 inches between last year and this year and they are just too small now. I am also currently working with the YMCA to sign Angelica up for private swim lessons as her CLTS program will also cover these lessons for her! We would like to get her into something and we know she loves the water! We are hoping to know more towards the end of May regarding these lessons.

The last major update is that as of May 12th, Angelica will have made it ONE YEAR SEIZURE FREE! Last year for Mother’s Day, I was in the hospital with her for a breakthrough and was not able to really celebrate like previous years. This year we are hoping that we can keep her healthy and continue pushing past this HUGE milestone and progressing forward each day! We are looking forward to her first summer hopefully with no interruptions and enjoy our quality family time together! We continue to be blessed with A LOT of family and friend support and want you all to know just how much this means to us! For us to now be feeling like we are experiencing a new normal, is an amazing blessing we do not take for granted at all! Thank you for all the love, support, care, and words of encouragement for her!

05/08/2026

She is so darn cute!

05/08/2026

Miss Angelica at therapy. She loves the bike!

04/06/2026