Angelica's Journey

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Angelica's Journey

Welcome! Meet Angelica. Angelica was born with a rare condition called Sturge-Weber Syndrome.

08/12/2025

Here are some videos!

08/12/2025

8/11/25 update

Hi everyone! I know it has been a bit since I provided an update on Angelica so here is where she is currently at! Over the past months, since her hospitalization in May, Angleica has been working really hard in her therapies and at home to do more. She is one determined little girl. Her therapist have been working with her on pushing up from a laying position to a seated position and going onto her belly using her arms instead of face planting, sit to stand, getting into all fours position to prepare for crawling, using sign language such as “more”, “all done”, “want” etc., having her be able to choose between two toys and what she wants to play with, more meaningful play such as putting a ball into the toy and have them make noise while falling down the path, working on her speech of being able to say more words to communicate better such as “all done”, “bottle”, “go”, “hi”, “bye”, “got it”, and “pop”, holding her bottle herself, and of course, eating food, which she is still not a fan of but has been starting to put toys and fingers into her mouth! As of two weeks ago, she is now able to push herself up from belly to a seated position and did this in front of grandma and mom! We were so proud of her! Back at the end of June she met with her neurologist and we reviewed her labs and found we could work on optimizing her Onfi medication more so we made a slight medication adjustment then but since, she has been doing good on these doses of medications and her labs all looked good after them as well. At the end of July, we met with her GI doctor and she is gaining weight again since we started to added Duocal to her bottles (a powder carb/fat mixture). This is good news as she started losing weight and we were getting concerned with growth. She is also tall for her age but just needs the weight! Since this new bottle-feeding change is working, we are just going to keep maintaining and working on baby foods! We have finally been able to schedule her laser surgery to lighten and reduce the likeliness of her port wine stain raising later on as she gets older. We had to wait until she was 2 years old because they do this under sedation. Her first treatment of her face, neck, left arm, upper right back and lower back is to be done this Friday 8/15. If she does well and we see a difference, we might do one more under sedation for the whole body, otherwise, we might just leave them as is after this one or do less of an area. Also, this month she has a follow up eye appointment to just make sure she is still clear of Glaucoma and an ENT follow up just checking on her tubes that were placed last year. As of now, we are not concerned about either of these. She continues to have 2 physical therapy, 2 occupational therapy, and 2 speech therapies every week unless she is under the weather. We have had a wonderful summer thus far and taking advantage of these nice days and enjoying time together as a family.

Last week Wednesday, 8/6, I returned to work after having my L4/L5 disc fusion of my back done back on 6/17. Recovery went well beside having an allergic reaction to something that took pretty much the full 6 weeks and steroids to get rid of! I go to physical therapy weekly right now to rebuild my strength and still am unable to lift Angelica until October 1st for my last follow up appointment, if all is still looking good. At that time, it sounds like I should be able to go back to normal lifting and carrying! My husband, mother-in-law and my mom have all been extremely helpful through this whole process and recovery! I can’t imagine trying to do all of this without them all! We are also getting Cassidy ready to start kindergarten in September! We have a lot going on/ a very busy life right now, but we are doing our best to enjoy our girls growing and learning! Praying that going into this year’s sick season we can minimize Angelica’s illnesses and avoid hospitalizations!

Here are some pictures and videos of Angelica since her last update! Enjoy!

06/25/2025

6/25/25 update. Hi all! As everyone knows, I had my back fusion last week Tuesday and everything went well! I am pleased to say my leg pain is gone and very little numbness remains but that could just be from the surgery itself. I am slowing getting around but mainly resting to heal right and get back to doing more. Thank you for all the love and support during this time. We appreciate it!

As for little miss... well we have found that she likes specific toys or toys in specific colors. She is really motivated by the orange ring on the tower of rings and the orange and blue fish that are in her little play fish tank! If I had to say her favorite colors, orange and blue it would be. She still loves her mickey mouse and bluey shows. She continues to get stronger and can really get around by pivoting and rolling. She LOVES riding on daddy's "tractor" (our old ridging lawnmower we converted over to a work horse tractor). She is grow alright. When we last met with her GI doctor they saw she started to drop weight so we adjusted her bottles to 5 bottles a day, 1oz water to 5oz of kate farms with a 1 tbsp of duocal. The duocal is to help her gain weight again. Feeding is still a struggle even just her bottles so we have been having to pump then partially to make sure she is getting everything she needs. Her height is fine just weight is a concern. We continue to try feeding but always with little success. She is babbling more! Showing more purposefull trying to communicate which is great! We are pushing that more and her physical needs than worrying too much on the feeding end as we still can control that with her G-tube. She is also currently struggling with sleeping through the night again and will only sleep on me. This has been extremely difficult for us as I can't lift her st all. So James has had to be up with me and it is definitely taking its toll on us. Last night she did sleep though the night so we will see where this goes. We met with her neurologist yesterday and decided to change her onfi medication from 3 times a day to 2 times a day but also increase it 1 mL over all. So she now gets 2 mL in the am and 4mL in the pm with her other medications. She had room to increase from her labs and we wanted to optimize this medication. The only other thing that might eventually come is switching her keppra to depicote, a strong verson of keppra but tends to work well in combination with her other seizure medications. This won't happen now but might in the near future. She has also been wearing her AFO orthotics to prep for crawling and eventually walking. She is tolerating them well which is a good thing! Besides all that the main thing is to keep her healthy and keep pushing along at our goals. If we can go 12 months seizure free we could look at possibly getting her off her Phenobarbital but unfortunately that is the medication she responds best too. As always, we will continue to provide updates as we can for you all and thank you for standing by Angelica and our family as we navigate this different unplanned lifestyle but we also wouldn't trade it for the world!

06/16/2025

6/15/25 update. Feels like forever since I have posted an update on Angelica so here is where we are at one month after we got home from her last hospitalization. Her recovery this time seemed to go a little faster and less sets backs than expected. She is still not wanting to eat food and ia still on her sole source formula but even that was now getting hard to have her take in 6 full 6oz bottles a day. When we met with her GI doctor and dietitian, they said we can go down to 5 6oz bottles a day but it would have to be just formula with no water or the 1 to 5 with the additive called duocal as she has began to drop in weight. Nothing too drastic but we need to stay on top of it. It is also requiring more pumping to make sure she is getting the full amount. She is doing good in her therapies and even used her right had independently from her left to pick something up and move it! She also now wears her AFO braces on her legs to help stablize her feet more for crawling and eventually walking. Besides that there is not too much to report but we continue to make little strides. Some of you may know but for those that don't, I am having to have another back surgery this week Tuesday and this time it will be a fusion of my L4/L5. Last year I herniated this disc and was a year out when I reherniated the same disc again. This happened back in early March and I have been working through this since then. This also means I am unable to carry Angelica again for at least 6 weeks or longer. Life has been crazy leading up to this point I just hope that once it comes and all is said and done, I will be in a better place to care for Angelica and our family. I appreciate all the love and support and will continue to keep you all update!

05/14/2025

5/14/25 update. Well, we made it home yesterday night. Angelica is doing good. She is really irritable and doesn't want to be held much which could be due to discomfort and/or pain. We have a plan to keep her home this week and will see how she is doing next week if she goes back to daycare or not. She has her tremors yet which is also frustrating her as they are in her left arm and leg which is preventing herself from being able to do things she is use to doing such as grabbing. It is good to be home but is still another recovery and sleepless nights for me. We at least didn't change any medications for her which is good.

I also don't believe I have mentioned that on June 17th, I will be out for another back surgery. I reherniated my L4/L5 disc again and they are now going to fuse these discs. I will be off/out of work for 4 to 8 weeks depending on my recovery. I will also not be able to lift Angelica for the first 4 weeks, maybe more, due to weight restrictions. I pray that she doesn't have another breakthrough while I'm out as well but they way our luck is, I am not to positive she won't.

We just want to thank everyone for your love and support during this time as well as the good times. We will keep you posted on her recovery and hopefully with warmer weather, illness is behind us.

05/13/2025

5/12/25 update. Today started off rocky. Angelica was really irritable, uncomfortable and just hard to console. As of Saturday evening, until today, she has been seizure free. Because of this, we were able to wean her off the versed drip. Around 10am we went down one step, then 3 hours later we were able to trun it off. A few hours later, this girl was all over her bed, smiling, pushing up on her belly, everything! Her irritability is completely gone and she has been more herself and seems to be feeling better. Still no signs of seizures and she is sleeping soundly. The best she has since being down here. We also got her to eat from her bottle and hopefully that continues to improve. We started with just half water and half kate farms. Tomorrow we are going to try her normal bottle ratio and see how that goes. We are also pumping remainder of bottles just like at home. Now we will work on getting her strength back and that there are no more seizures. Then work to getting home! Keep the prayers coming 🙏 More to come tomorrow. Thank you!

05/12/2025

5/12/25 update. As of yesterday, Angelica has woken up more and is moving around more. She is also moving both arms and legs which is good. They did have to go to a versed drip to stop her seizures and had to increase this dose once. Since that increase on Saturday later afternoon, she has not had anymore seizures. All day Sunday we monitored and make sure she didnt get worse and now today, we are looking to possibly wean her off the drip. She also had another MRI completed yesterday and we are waiting for Neurology to come this morning to let us know what the results are. We will update today after we learn more and find out what the next steps are. Slowly but surely she seems to be fighting through. More to come.

05/10/2025

5/10/25 Sorry for the delay in updates. Life has been really crazy for us since Angelica's 2 year old physical. After that appointment, she saw neuropsychology and they placed Angelica at around a 1 year old developmentally. So she is about 1 year behind but with all things considered, that is pretty good. We alao have had a follow up with her eye doctor since then as well and her eye are still checking out good. She is now seeing PT, OT and speech each two times a week as well and has been working hard to get closer to crawling. Prior to today, we made it to 5 months seizure free. Unfortunately, on Thursday of this week Angelica's daycare reached out towards the end of her day at daycare and said that she seemed off. When dad went to pick her up he knew something really was wrong. We had her taken by ambulance to St. Vincent ER to evaluate her. They gave her some medications per Children’s Hospital and when she seemed to stabalize, we were told to go home and monitor Angelica. This was not ideal at all as I would have thought she would be transferred and seen at Children’s Hospital since she te**es positivefor rhinovirus again. We ended up going home. While at home all she did was sleep and cry out in her sleep. Wouldn't eat anything orally and spiked a fever for the day. At 4pm I knew something was wrong and I planned to drive her to Children's hospital myself but before I left at 6pm, she has a seizure but this one started on the right side of her brain resulting in her left leg twitching. I didn't think she would make it the 2 hours so we ended up back at St. Vincent's and asked to be transferred. They did a CT scan of her head as well to rule out any other causes to her presentation. Nothing of concern showed up. She was transferred down to Children's hospital at 11:30pm yesterday to their ER for evauation and that resulted in admition to the PICU due to how lethargic she is. We finally transferred from Children’s Hospital ER to the PICU at 5am this morning. They go the EEG on her around 6am and at around 9am she had a right brain seizure that could only only have been seem on an EEG. This is not her normal seizures normally coming from the left side of her brain and the only other time she had a seizure on the right side of her brain was in October of 2023. We are currently waiting for Neurology to come in and do rounds to see what our plan is for this hospitalization. I will keep you all posted as we find out more so please keep her in your thoughts and prayers. Thank you.

04/17/2025

4/16/25 Tomorrow Angelica has her 2 year old physical and her neuropsychology evaluation. I will post an update on how Angelica has been doing since her 24 hour EEG. More to come.

04/17/2025

We have been able to locate all three locations Angelica's billboards were posted! Last day to see them is 4/20!

03/26/2025

Military and Bond, Green Bay, our sweet Angelica

03/24/2025

3/24/25 Update #2: So another thing happening, starting today, Angelica will be on THREE different billboards promoting speech therapy at CP therapy services! We were asked if we were alright with using her picture for this and I was like, sure! We would love that. Here I thought they meant her picute along with other, then to my surprise when they sent me the proof, I was shocked! These billboards will be of just Angelica and the promotion of speech therapy! Angelica has a way to touch people every where we go! Everyone at CP knows who she is and when their marketing team comes in to take pictures, they always want to grab some of her! It amazes me everyday, how strong and loving Angelica is. Even though her life might be different from others, you can tell as time goes on that her resilience and stubbornness have developed her personality and she can just touch people's hearts. 💕 Below is the picture of what will be on the billboards and I have included the locations and how long they will be up! Feel free to take pictures for us if you see the billboards and share them here! We would love to see all three locations if we could! I will have one other posts with all her updates from the past month or so since she had her 24 hour EEG. Thank you all for your prayers, love and support ❤️ And please know that you all are always on ours minds as we watch Angelica grow too. Without our Army, I'm sure this road would be very different, but we know just how truly blessed we are to have the support and backing we do so thank you for that!

There will be three billboards running 3/24-4/20.
3 locations:
· The corner of Military & Bond St (Green Bay)

· The corner of Webster & Allouez Pl (Green Bay)

· 2801 Newberry St (Appleton)

Again, if you see them and can grab pictures, we would love to see them! Thanks!

Address

3360 HAWK RIDGE TRL
Green Bay, WI
54313

Telephone

+19207374922

Website

http://www.angelicasjourney.com/

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