Madi's Journey

09/23/2021

On our way to Atlanta for our follow up that was rescheduled from July (due to Granny and Papa being on hospice and passing away 💔) . Hoping to discuss all of the information and records we have from Texas and decide on which route is best. She is still having the atonic (drop) seizures and the myoclonic seizures but not nearly as often. Prayers for safe travels and some answers and comfort after we speak with Dr. Bala today. I'm going to ask about the possibility of a helmet if the tonic clonic and atonic seizures continue to be frequent.

I've had 6 hours of sleep in 3 days. She was up at 2am ready for our girls trip 😊 but is now sucking her thumb and snoozing in her seat. Praying she does good on this trip.

09/16/2021

As of today (Sept 16,2021), we have not had a tonic clonic seizure since the last one a few weeks ago. She is still having the atonic (drop) seizures and myoclonic seizures regularly, but not as often as she was. There has been a few absence seizures, but not many.

She was on 2mls of Onfi two times a day(liquid medicine we started back in Jan) but now is on 3mls two times a day. She was on Depakote (the sprinkles where we take the capsules apart and mix with applesauce for her to take) with 125mg (1 capsule) in the morning and 250mg (2 capsules) in the evening. We increased this to 250mg (2 capsules) for both the morning and evening doses. Crossing our fingers this is making the difference, yet we still would obviously like to see more improvement, and eventually zero seizure activity at all.

We go to Atlanta next Thursday Sept 23, 2021 for our follow up with Dr. Bala for the neurologist. I will ask about medication changes as well as the possibility of a helmet (in case these do change and get worse) simply because we do not want her to harm herself when she has these like she has so horribly in the past.

We have been so blessed with such amazing women at All About Kids to take care of her, go that extra mile and love her so good! I know she's in great hands when I take her every morning!

First Pic :She picked out her own outfit, socks and ballerina shoes 😍

Sec pic: Mrs. Whitney sent me today from school. Yall see how hard she's concentrating 😂😍

We are continuing to pray she gets better, these awful seizures leave her sweet little body, and she can live a normal life. We get to celebrate Saturday for her Barbie themed birthday party so she is super excited! And she is quick to tell you she will be the big 4 on her next birthday (Sept 21,2021)😍😍😍

09/04/2021

It's been a while since I've made a true update. With both Granny and Pa passing, the funeral, my own issues.... We've kept to ourselves for a bit. We've had several heavy and emotional weeks and wanted to update on how she's been.

**She said she wanted "big hair".... So big hair she got**

❤️🧡💛💚💙💜

She after going to Jacksonville and that scary ordeal, things seemed to even out for a couple weeks.

August 6, 2021 I got a call from daycare that she'd had a tonic clonic seizure, was about a minute long. I got to her, checked on her and took her home.

She'd started to have an atonic (drop) seizure every now and then, but not every day. She'd also had the myoclonic seizure(jerks) every now and then.

August 24, 2021 daycare called and she screamed at me "Madi's Having a seizure!" I immediately jumped up, grabbed my purse and keys and went running. Before I could get to the back door of work, she called again and said it was bad, they'd called EMS. This Mama was running 70 thru town, praying my baby was okay! It took only a matter of a few minutes to get from work to her, but it seemed like an hour. They had her laying on her side, holding her when I got there. The tonic clonic seizure had lasted about 3 minutes (maybe a tad more). I was told she was walking and talking then started to seize and fell. She did not hit her head that we know of. EMS arrived, checked on her and asked if we wanted to transport. I declined because at this point there's nothing the hospital can do. So we took her home. That afternoon she had 3 of the atonic (drop) seizures within about a 10 minutes span.

August 25, 2021 she had 2 atonic (drop) seizures that morning.

August 26, 2021 she had 1 absence (stating off) seizure before school and an atonic (drop) seizure at school.

August 27, 2021 daycare called saying she'd had an atonic (drop) seizure and hit her face on the table but she was alert and acting good. Then called asking what the jerks would look like in her sleep ( it was nap time) . I explained and was told she'd a few back to back. That they woke her to check on her and she was alert so she went back to sleep. A couple hours later, got another call that she was pretty much having them back to back so I went to her. She had roughly 4-5 with me just watching her body while she slept. We decided to take her home. I did call Atlanta and leave a message asking for advice and what we needed to do, but unfortunately had to leave a message.

August 28, 2021 she had several of the absence seizures and a few of the atonic (drop) seizures with her Daddy.

August 29, 2021 she had an atonic (drop) seizure at home and hit her face as she fell. Then had 4 more throughout the day. Once we were in Walmart, she had one and fell. So a total of 6 on this day.

August 30, 2021 daycare let's me know she's had the atonic (drop) seizureb but was okay other the a scratch /bruise on her chin. She also had 6 atonic (drop) seizures that afternoon with her Daddy.

August 31, 2021 she had an absence seizure this morning. Daycare said she did okay, but was not her self. She was very subdued, wanted to really just lay around and didn't really want to play. She had 2 atonic (drop) seizures last night and 1 absence seizure before bed.

Sept 1, 2021 she had an absence seizure this morning as well as 2 atonic (drop) seizures, one of which she hit her head pretty good. She was groggy and very kind out out of it after. After about 15 minutes she seemed to be herself so she went to school.

I'm at a loss as to what to do. We've increased meds, we don't go back to Atlanta until Sept 23. It's almost to the point (again) that's she's a danger to herself. She literally can't be alone, not even for a minute. I just ask that yall pray. Because this Mama's heart is worried and tired and lost. Pray for her little body, because it's been ravaged by these horrid things and there seems to be no end in sight.

07/15/2021

Y’all please send ALL the prayers Lacey’s way! She is an AMAZING person and an even better mama to her three babies!! Everyone needs help every now and then and Lacey is NOT someone to ask for help! This is me (Vieve) asking for our Facebook community to come together and help! LETS SHOW LACEY SOME LOVE!! Lacey found out yesterday that Jacksonville’s visit will be ALL OUT OF POCKET! Madi has Ga Medicaid so Jacksonville won’t take it! 😳 she has a lot besides madi on her plate and as everyone knows bills never stop! This post last night is from Lacey’s private page! She would never post on here because she wouldn’t want people to think she’s asking for anything but I wil do it for her! Asking for help is not a sign of weakness!! Love you Lacey!

https://www.facebook.com/donate/811339856185110/?fundraiser_source=external_url

- Vieve -

07/12/2021

Keep the prayers coming!! If you feel led to donate anything towards Madi’s medical expenses check out her page and the fundraiser is on there! ♥️

Madi (and Honey Bun the bunny) are on the way home. Dr said he agreed with Houston on the med dosage and levels of the valproic acid (the Depakote) were within normal limits. He again, doesn't feel the medication is the cause of yesterday. It could have been her body in the between stages of coming off Keppra, no meds at all then adding Depakote. This very well could have been the seizure they were hoping to see in Houston.

We are to follow up with her pediatrician this week for follow up, as well as getting the labs that Houston wanted repeated. I also found out that Wolfons is an epilepsy center with epileptologists there. Which would closer than Atlanta is we chose to go there. They did give us all the contact information.

She's still very hard to understand on some things and her coordination is still off but she's happy. She's smiled at me and told me she loved me ♥️

Again I know I've asked for a lot or prayer but God is hearing yall♥️ Thank you to everyone who's messaged, text, called, donated and prayed. I still have some people to personally answer and I promise I will. I'm so ready to get home to my boys. I haven't seen them in 11 days. I never got to see them yesterday before all of this happened. Yall pray for my boys that have been completely off schedule because of the last 2 weeks, how they've had to adjust and be without me for this long. I can't say thank you enough for everyone who's helped me with the boys and my Granny and Pa while we're gone. It's so hard trying to be in 3 or 4 places at one time to care for your loved ones. It's such a hectic routine having my 3 kids plus helping Granny and Pa but lord knows I'm ready to get back to it. I'm ready to sleep in my bed with my babies.

I will continue to update as she goes through the week and as we follow up with the drs.

07/12/2021

Madi (and Honey Bun the bunny) are on the way home. Dr said he agreed with Houston on the med dosage and levels of the valproic acid (the Depakote) were within normal limits. He again, doesn't feel the medication is the cause of yesterday. It could have been her body in the between stages of coming off Keppra, no meds at all then adding Depakote. This very well could have been the seizure they were hoping to see in Houston.

We are to follow up with her pediatrician this week for follow up, as well as getting the labs that Houston wanted repeated. I also found out that Wolfons is an epilepsy center with epileptologists there. Which would closer than Atlanta is we chose to go there. They did give us all the contact information.

She's still very hard to understand on some things and her coordination is still off but she's happy. She's smiled at me and told me she loved me ♥️

Again I know I've asked for a lot or prayer but God is hearing yall♥️ Thank you to everyone who's messaged, text, called, donated and prayed. I still have some people to personally answer and I promise I will. I'm so ready to get home to my boys. I haven't seen them in 11 days. I never got to see them yesterday before all of this happened. Yall pray for my boys that have been completely off schedule because of the last 2 weeks, how they've had to adjust and be without me for this long. I can't say thank you enough for everyone who's helped me with the boys and my Granny and Pa while we're gone. It's so hard trying to be in 3 or 4 places at one time to care for your loved ones. It's such a hectic routine having my 3 kids plus helping Granny and Pa but lord knows I'm ready to get back to it. I'm ready to sleep in my bed with my babies.

I will continue to update as she goes through the week and as we follow up with the drs.

07/12/2021

It's been a very long night and day so I apologize for taking so long to update. I appreciate every single phone call, Facebook message and text checking on her.

We got loaded up and left CRMC about 7PM. Due to the weather in Jacksonville they could not send a helicopter so we had to wait on an ambulance. They had a team of 4 people who took good care of my baby on the way here. We got here, checked in and they went ahead and took blood for labs. The ER Dr was absolutely awful, but the nurses and rest of the staff were so nice. He felt like the Depakote was too much and needed to be changed. I disagreed and told him so. She's been on the medication since Wednesday and other than being sleepy, was acting semi normal. He said the valproic acid levels at CRMC were 124 and that was high sl that's why he felt the med was too much. He didn't feel like there was much that could be done due to her not being a neurology patient already. Our options were to send her home or admit her and let the neuro team look at her and evaluate to see if they wanted it run any tests. I said she needed to be evaluated.

Before we left the ER, she woke up and said she wanted a snack. She ate a few animal crackers and went right back to sleep. We got to our room about 130am. Got her all settled and she slept. They come in this morning, hooked her up to the EEG for a couple hours to see if there wany seizure activity.

The neuro and a team come in. He said that for the Depakote, the levels they go between are 50-150, so the 124 in Douglas was normal as well as the 80 that was done at Wolfons. He feels like the medication isn't the issue, that she could actually go up on it. I told him we had plans to increase next week, per Houstons orders. Obviously nobody can go back in time but he said it is a high possibility that she had a seizure while she was sleeping. Especially with the symptoms she's shown all day yesterday and last night. It must have been a pretty bad one which is something that Houston expected since we was going from 2 meds, to nine, to different meds. Her body may have been in limbo and finally hit that seizure point.

She did wake up this morning and eat a few bites of eggs, went right back to sleep. She was fitful but did sleep a little. She also ate a little bit of mac&cheese and chicken strip for lunch which is more than she's eaten at one time in a long time.

Her speech is changed, it's very hard to understand her so we will make sure Houston knows this as well. She's very sleepy and will close her eyes, wake up to rub her hand along my arm then close them again. They're going to repeat the labs to make sure the Depakote is not affecting her liver, but he didn't think that was the case with the way she was feeling. They've came and unhooked the EEG and she's trying to rest now. Should be going home sometime today. The neurologist did say their hospital had actual epileptologists here, if we chose to use them. They would be closer than CHOA obviously but that will be determined later.

I know I ask a lot but please keep praying. Yalls prayers are being heard. Hearing her say Mommy I want a snack and looking at me was wonderful ♥️Praying her coordination and speech continues to improve.

07/12/2021

This is what she's been like all day 😭😭😭

sorry to make several posts, the page won't allow me to upload pics and videos and only 2 video at a time *

07/12/2021

This is the most active she was all day💔 She wanted to sit up, but not be touched. You can tell in her eyes she's not okay 😭

sorry to make several posts, the page won't allow me to upload pics and videos and only 2 video at a time *

07/12/2021

This is her when we first got to the emergency room

*sorry to make several posts, the page won't allow me to upload pics and videos and only 2 video at a time *

07/12/2021

Yall I know I ask for prayer all the time and yall probably get tired of me 😔. But I'm asking again!

We got home about 730 last night. She had a snack and drink like she normally does. She had a few myoclonic seizures and the atonic seizures but nothing we weren't used to. She had a normal night. She woke up and was up about an hour or a little more then got sleepy, I assumed from the new med as she slept quite a bit yesterday but was normal in between naps.

She woke up from her nap and was clumsy and groggy, again, I assumed from the med. She would cry out but never would truly wake up. This went on about an hour. I tried to get her to stand and walk to me, she could do neither. I couldn't get her to sit up on her own. Her eyes were half open /half closed but she wouldn't respond to me. Her eyes wouldn't focus on me, she couldn't answer me, she was spacey and she wouldn't talk. She then had an accident and we decided it was best to take her to the emergency room.

They got us straight to a room. Got labs drawn, IV started and monitors on. The Dr got her history and called Texas since we just left. In the meantime, he tried to get her to sit up and respond. She wouldn't fully open her eyes and focus on his light or his finger. She would make a small whine every now and then but never truly woke up. The ER was concerned she was having sever absence seizures back to back. Her heart rate would hover between 65-85 then jump to 135-165and she would semi cry out then go right back out.

He came back and said labs were normal. He said she wasn't stable to go home so did I want to go to CHOA or Jacksonville, we chose Jacksonville. We were unsure for about 30 mins if they were going to transfer her by ambulance or helicopter, but due to the weather in Jacksonville they had to send an ambulance. This is my Madi on the stretcher to go with them. We are currently at Wolfons Children's Hospital in Jacksonville FL. We have had labs drawn, IV started and she's sleeping. They're going to admit us. Not sure exactly when. I will post videos of what she's been like in just a bit.

You can tell she's not there, she's not my Madi.

07/11/2021

Y’all PLEASE be praying so hard for Madi and her mama and her brothers right now!! I’ll let lacey update once she’s ready too but madi needs prayers!!

— Vieve