Gabby's Story

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Gabby's Story Gabby was diagnosed with bilateral Sturge Weber Syndrome at 6 months old. She has been battling seizures and other issues since then.

Gabriella Grace Dolniak was born on August 1, 2011. She was born with a port wine stain (PWS) on the right side of her forehead and eye area. With this PWS came possibilities of other medical conditions. In February 2012, at 6 months she had her first seizures and spent 8 days in the hospital trying to get her seizures under control and regulate the medications being given to her to control her se

izures. While in the hospital, she had several tests completed (CT scan, MRI, & EEG), to determine the cause of her seizures. Her diagnosis was Bilateral Sturge Weber Syndrome and that she had had a stroke. This syndrome (disease) has caused Gabby to suffer from seizures, causing weakness in her extremities and with those come developmental delays. With this disease there are possibilities of having additional strokes, developing glaucoma and/or various other issues. To date she has been hospitalized approximately 15 times and is on 4 medications and a Vagus Nerve Stimulator (VNS), which was surgically implanted in September 2012 to help in controlling her seizure activity and hopefully reduce her medications. Gabby used to have physical, occupational and speech therapy once a week each to help get her development on track for her age group, but due to changes in the State programs she only gets a team therapy once a week. This hasn’t been very beneficial for her and we would like to get her additional therapy. Gabby is now 2 years old and has not been able to crawl on hands and knees, walk or talk. We have researched aquatic therapy and hippotherapy and these would benefit her in many areas to help her grow and strengthen her to succeed in her development and is an immediate need. This will be our next goal to get her into.

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23/11/2023

It’s been about 2 month or so, but our girl is finally potty trained. She has been doing so great and hasn’t had any real accidents. So proud of her!! 💕🥰♥️🚽🎉

11/10/2023

We made it back home around 130 this afternoon. She’s doing well, laughing and watching her iPad. She ate some snacks and is asking for nuggets. 🥰💕

11/10/2023

Gabby’s out of surgery and Dr said everything went well. We’re waiting to go back and see her. Once she’s awake we can go home. Thanks for all the prayers!! We appreciate it! 🥰🙏🏼💕🙏🏼

11/10/2023

She’s finally been taken back for surgery. They gave her some versed about an hour ago to help relax her cause side was a bit of a brat getting vitals done. She was nice and loopy afterward. 😂 Should only take about 10-15 mins once they get her under anesthesia. VNS rep said her VNS was pretty low 0-8%, so thankfully she wasn’t having any seizures. Praying for no complications with the leads. 🙏🏼💕🙏🏼♥️🥰

Surgery day for this big girl. I’m a little stressed, but I’m sure everything will go fine.  She’s having her VNS batter...
11/10/2023

Surgery day for this big girl. I’m a little stressed, but I’m sure everything will go fine. She’s having her VNS battery replaced this morning. Surgery is scheduled for 930. Prayers that everything goes well. 🙏🏼🥰💕🙏🏼

Gabby’s scheduled for surgery on October 11th to get her VNS battery replaced as it’s getting low. This surgery should b...
21/09/2023

Gabby’s scheduled for surgery on October 11th to get her VNS battery replaced as it’s getting low. This surgery should be less invasive compared to the last 3 since it’s just the battery being replaced. He will inspect her leads to make sure everything is still good and hopefully there won’t be any issues with the leads. 🙏🏼🥰💕🙏🏼

24/08/2023

I took Gabby to her neurologist for a follow up. He checked her VNS and the battery is showing low, so she’s got to have a follow up with neurosurgery to see about getting the battery replaced. He also checked her medication levels from when she was in the hospital to see if she needs her meds adjusted. He said her trileptal was on the low side but still ok, but her keppra level was really low so he’s increasing her from 8mls to 10 per dose. We have an appointment mid September with neurosurgery to see about getting the battery replaced. Hope that it will go quick and well.

11/08/2023

Gabby had some pretty consistent drop seizures while taking her bath this evening. This caused her not to want to get out of the tub and her 100lbs self is a bit much to try and pull her out while fighting me. I had to call for reinforcements to help get her out, but after about a half hours of sitting there and 15 mins or so of not having a seizure she finally let me help her out to go potty. lol I didn’t notice anymore until walking to her room for bed, but thankfully I was there to grab her so she didn’t go down. She continued to have some more but they were subtle and not as strong as earlier. This poor girl!!! I’m so thankful for the days that she doesn’t have any, but really hate the days that she does. 🙏🏼💕🙏🏼💕

05/08/2023

Morning update - Gabby is doing better this morning. Still very sleepy but alert at times and responding to questions. Eric got her to laugh as well. Her last seizure that I noticed before crashing out was about 830 last night and haven’t noticed any this morning. She’s moving her right arm & leg, but her left side is still pretty limp as well as her body in general. She usually bounces back pretty quickly, so hopefully in the next couple of days she’ll regain some of her strength back. Thank you again everyone for keeping my sweet girl in your prayers!! It is so very appreciated by my family. 🥰🙏🏼💕🙏🏼♥️

05/08/2023

Update - we’re home now, however she’s still having some seizure activity which is involving her legs now and not just the eye deviation. I’m hoping they start to subside so we don’t have to go back to the hospital. She’s still completely out of it, no muscle tone whatsoever. Hope my silly girl comes back to me soon. Thanks again for all the prayers and please keep them coming!! 💕🙏🏼♥️🙏🏼

Update - all tests came back negative or normal. Her X-ray does show constipation, but not sure yet if they’re going to ...
04/08/2023

Update - all tests came back negative or normal. Her X-ray does show constipation, but not sure yet if they’re going to treat that. She had another seizure around 1230 lasting about 4 mins. They gave her Ativan to help stop it cause the magnet wasn’t helping. The ER Dr talked to her neurologist and he said to give her fosphenytoin which is another anti convulsive drug. The last seizure knocked her out so she’s been sleeping. Still waiting to hear if she’s going to be admitted or not. Thanks for the prayers. Hoping she pulls out of it soon. 🙏🏼💕🙏🏼💕

04/08/2023

Well we’re in the hospital. Gabby didn’t do too well through the night. She cried and moaned throughout the night as well as vomiting several times. She’s completely lethargic (dead weight) and listless. They are doing blood sugar, blood work, strep test, covid test, urine test, flu test and belly X-ray. Poor girl has been swabbed and poked just about everywhere. She had another somewhat long seizure since we’ve been here. She’s resting now and hopefully it’s nothing major. I think it’s her constipation that might be the culprit. 🙏🏼💕🙏🏼💕

04/08/2023

Gabby had a dentist appointment under anesthesia early this morning and everything went well with no additional issues. We got home and she had some grapes to eat and had lunch later on. When it was time to get Drew she didn’t want to go and I thought she was being her difficult self at times, but then we noticed she was actually having a seizure. I then realized I completely forgot to give her, her meds this morning. I feel so bad about spacing it and possibly causing this seizure. It lasted at least 5 mins. Tried the magnet a few times and was finally able to give her the meds after it subsided. She’s been miserable since, sleepy and outbursts of crying. I finally was able to give her some pain meds thinking maybe she’s in some pain of some sort. She’s resting on me now and start to settle some. I really wish she was able to tell me what she’s feeling or what hurts instead of playing a guessing game. 🙏🏼☹️💕🥰🙏🏼

13/03/2023

Well my little girl is now a woman. This must’ve been the cause of her seizures this last week. Hopefully it will be smooth sailing and not cause her too many problems each month.

12/03/2023

Today was a much better day for Gabby. I woke up to her getting out of bed on her own, so I ran to her room to help her and when I got there she was on the floor with a big smile on her face. I helped her to her feet and she was able to stand and walk but unsteady. We took the wheelchair to the living room, but the rest of the day I had her walk with me supporting her. Her appetite is back and she ate really well for breakfast and did good at lunch. She was laughing and being silly like her normal self. So happy to see her get back to her norm. Thanks to all her prayers warriors out there!! 🥰💕🙏🏼♥️✝️

10/03/2023

Gabby seems to be doing better this morning. She’s eaten a yogurt and some apple and pretzel sticks. She said she feels better. She’s been joking with Eric and laughing. Her mobility is increasing. She still has some weakness of her left side but it’s slowly starting to regain strength. Thank you again for all the prayers for my sweet girl! 💕🙏🏼♥️🫶🏽✝️🥰

10/03/2023

Gabby had a bit of a rough day with some silent seizures this afternoon. I talked with the nurse at her neurologist office and she contacted her Dr. He wants us to give her an extra dose of her keppra and see if that helps stop them. She’s still weak but starting to move her leg some. Hopefully they will stop and she can start recovering from these dang things. Thank you all for keeping her in your prayers!! 💕🙏🏼♥️🥰✝️

09/03/2023

This morning Gabby’s still not doing too well. She’s still pretty weak on her left side and she just does not feel well. She has little bouts of crying and wants mommy to snuggle with her. She had a low grade fever this morning, but seems to back to normal now. Just hope she starts to feel better soon. I hate to have to take her in to the hospital and make her feel worse. 💕🙏🏼🥰♥️🙏🏼

08/03/2023

Gabby’s still not doing too well this morning. She’s weak on her left side and is not able to walk. She can move her left side some but not very well. I had to pull the wheelchair out to move her to the living room. She feels warm but no temp. I haven’t noticed any seizures, but she could be having some silent ones that I’m just not seeing. Prayers for my sweet girl and hope this passes quickly. 💕🥰🙏🏼♥️✝️

08/03/2023

My poor monkey has had about 20+ seizures this afternoon/evening. Most of them quick but strong and a few a bit longer. I really hate these things and more so cause she’s nonverbal and can’t really tell me what she’s feeling or that they’re happening unless I actually see it. I walked in her room to get her iPad to get them ready for bed and apparently she was having a seizure and I didn’t realize until I reviewed the camera footage. I felt so bad. 😔 Just hope that tomorrow is better for her. 🙏🏼💕🙏🏼

12/01/2023

My poor girl is having seizures again. She’s had 5 already today since this afternoon. Not sure if she had any at school, nothing was mentioned. Not sure if it’s her possibly about to enter womanhood or just her growth, but we’re not too happy about it and neither if she. ☹️ I really hate when they come back cause then I’m worrying about her when she’s not with me. Hopefully tomorrow will be better. 🙏🏼💕🙏🏼💕

30/11/2022

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18/04/2022

Gabby is doing better this morning, but still weak on her left side. She’s got more movement in it but not much strength. She wanted to go shopping so Eric took her to Walmart in the wheelchair since she still can’t walk. She’s still somewhat emotional so hopefully their trip goes well. Happy to see her starting to return to herself. I hate to see her down and out when she normally has so much sass and energy. Love my sweet girl!! 🥰🙏🏼💕✝️♥️

18/04/2022
18/04/2022

Gabby’s finally starting to show some improvement. Still not much movement from her left side, but she’s starting to eat now and drinking a bit more. She’s also a little more alert and interactive. I did call the on call Dr this morning and she didn’t feel the need to have her brought in unless we were feeling uncomfortable with how she was doing. She also suggested treating the low grade fever. I did give her some acetaminophen this afternoon and shortly after she started showing some improvement. Now to get her limbs working again. Thanks for everyone’s prayers and well wishes, we really appreciate it!! 🥰💕🙏🏼✝️♥️

Gabby’s still having a rough day.  We noticed a few silent seizures this morning and possibly one this afternoon. She’s ...
16/04/2022

Gabby’s still having a rough day. We noticed a few silent seizures this morning and possibly one this afternoon. She’s sleeping a lot and still not able to move her left side much. Got her to drink a little more last night, but not much today and still not eating. She gets upset if we move her around too much. I’ve been wrestling with calling her Dr to see if we should bring her in or just give it another day and see if she improves. I have also been giving her the emergency med to see if it will help. I wish she could tell me what she’s feeling. Prayers for my sweet girl that she starts showing some progress, so we don’t end up in the hospital. 🙏🏼💕🥰✝️♥️

15/04/2022

I was woken around 1230 this morning to Mickey Mouse clubhouse blaring in the living room. I got up to find Gabby watching TV. I told her it was way too early to be up and tried to get her back to bed. She was upset at first but was able to put her in bed and laid with her till she fell asleep. This morning as I was getting up I heard her cry out on the monitor so I went to her room and she was sitting on the floor in front of the door. I asked her if she could walk and she said no. I picked her up to help her and her left leg and arm were not responding well. I helped her back to her bed and realized she had thrown up at some point after putting her back to bed. I got her cleaned up and changed. I pulled the wheelchair out to get her to the living room and she’s just been resting on the couch. I was able to get her meds in her including the emergency one. She took a good nap. Won’t eat or drink much. Got her to eat a few pieces of graham crackers and a few sips of water. Hoping she starts to feel better soon. Poor baby girl!! 🙏🏼🥰♥️✝️💕

15/04/2022

Gabby had about a 10 minute seizure at bedtime. Didn't realize she was having one until about 6 mins in cause I was reading to them. She tried to stand up to get to her bed and fell over. Left side was weak. We used the magnet and it appeared to stop shortly after. After I finished reading I noticed her just sitting there not moving much but more swaying. Checked her eyes but didn't see any deviation. After I got her to bed, I checked the video and it looks to have started right before I started reading. You see a few jerks during it as well. I stayed with her until she fell asleep which took only a couple minutes. She was snoring and sleeping well. Not sure what caused it, she'd been fine all day.

This girl is killing this potty training finally. She went this morning after getting up and then at school and this eve...
04/03/2022

This girl is killing this potty training finally. She went this morning after getting up and then at school and this evening at home. So proud of her!! Still having some accidents, but think it’s more laziness cause she’s too busy playing. So happy that we are making some progress!! Yay Gabby!!! 🥰💕🎉♥️😘😍

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