March On PVNH 2022-2024

 

#MarchOnPVNH

Sage was diagnosed with PVNH at only 5 months old and soon after I discovered a PVNH Facebook group. I then learned about the PVNH awareness month and knew it would be so therapeutic for me to participate. It has been a yearly tradition for me ever since then and we are on our third year of participating in the #MarchOnPVNH awareness month campaign. It has been so good for me to have a platform to share each part of our story and how it has impacted our lives. Periventricular Nodular Heterotopias was Sage’s second diagnosis, and it was our biggest push into the special needs world and made her Epilepsy diagnosis that much more real.

March has a whole new meaning for me after participating in this awareness month, and I hope you can have compassion and hopefully find something meaningful through our experience.

Enjoy!

2022

March 1: Diagnosis

Our diagnosis journey has been a long and complex thing this past year. We still don’t have all the answers but are working with many specialists to find those answers and give Sage the best life and care we can.

Sage was born at 38 weeks 6 days gestational via planned c-section. She came out with a full head of hair and was everything we could have hoped for! We were in the hospital less than 48 hours and then got to go home to introduce her to her sister, Clover.

By about 6 weeks old Sage had what most would call an “exaggerated startle reflex”, but in my gut I knew that something wasn’t right. I had forgotten to mention it to our pediatrician at her 2 month check up (I had tried to convince myself it was probably nothing), but about 2 week later the feeling that something was definitely wrong was really strong, so we took her back to the doctor.

After looking up her symptoms I thought she had Infantile Spasms, but our doctor assured us he had never seen that diagnosis in his over 20 years as a family doctor. That did reassure us for a bit. A month later the frequency of the spasms was increasing and seemed to be getting more intense, so we took her back in and got a referral to a neurologist.

We were super lucky and got in to do an EEG the next Tuesday (we got the referral on the previous Friday). While we were there for the scan the neurologist had a cancelation that afternoon, so we were able to meet with him. At first he told us her scan was normal and she was pretty much on track developmentally, but then she had spasms while he was in the room. He watched her as it happened then left to review her scan again.

He said It still looked normal but he wanted to do a longer one. We set up a 24-hour EEG for the next day. We hooked her up to the machine and they sent us home with a video camera and the portable EEG machine. It was very long day and night. I had to move the camera and all the equipment whenever I moved her. We went back the next morning to get it all taken off. The tech told me that it usually takes about a week for the neurologist to have enough time to review a scan that long, but with our suspicion of IS he was going to try to do it in a day.

He called us the next night (one week from when we got the referral) and told us the scan was still normal. I had been hoping that news would make me feel better, but it didn’t…. He gave me his personal number and said to let him know if anything else happened with her, or better yet if the spasms stopped.

A week and a half went by and the morning after she turned 4 months old, she was in bed with me and I felt her whole body stiffen up. I rushed out to our living room and called the neurologist. He didn't answer but texted me right back. I told him I was pretty sure she had a seizure and he asked me to get a video if it happened again and send it to him. Every time she woke up from a nap, all day long, she had seizures…

I sent the videos to our neurologist and as soon as he saw them, he had us go to the ER and he called ahead to tell them we were coming and what medication to give her. (Come to find out he was actually out of town visiting family, but he still responded ❤). He told me she was having tonic seizures.

The following month was a blur of doctor visits, trying a few different medication options, but after she was still having multiple seizures a day, and one day they just felt different to me, we were back in the ER and ended up being admitted overnight for observation because she was started on phenobarbital (can cause decreased breathing and heart rate, so they needed to make sure she coped with it ok).

Later that same week she had an MRI. The doctor thought it wasn’t going to show much of anything, but it did.

Sage’s MRI showed that she has Periventricular Nodular Heterotopias (PVNH). It is a developmental brain disorder that she was born with and it has been causing her seizures.

“During early brain development, when the baby is still in the womb, normal cells migrate from a location beside the ventricle to the surface of the brain. In PVNH, a small portion of these cells fail to migrate and stay as clumps around the ventricles.”

It was a very hard diagnosis to be faced with, but at least we now knew the cause of her seizures. It is a very rare disorder and affects every person differently.

After adjusting meds a bit, we got the tonic seizures more controlled, but she was still having spasms like before. Since the spasms hadn’t stopped, we did another EEG that did in fact confirm she had Infantile Spasms. With that additional diagnosis, she was started on steroids and after that didn’t stop the spasms, we started Vigabatrin. We finally saw more improvement and the spasms stopped for a while but was then replaced by atonic eye roll/head drop seizures.

We were about to start her on the keto diet, but the long trip to meet with the specialist (across the state- 4 hours away) ended up putting her in the hospital for a few days after we got home, we put a pause on that. We aren’t sure why, because we haven’t changed much, but she has had fewer seizures since then than she has ever before! The whole month of February 2022 she had a grand total of 3 seizures, totaling less than 1 minute all together 🥳🥳🤞🤞.

We still have a long road of genetic tests to do to pinpoint the cause of her brain malformations, but we are encouraged by her progress. She is such a happy, sweet baby!

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 2: Milestones

As I said in my post yesterday, when we first got Sage in to see the neurologist she was more or less on track developmentally. Looking back, if I’m completely honest with myself, she was developing a bit slower than she should have been. But I kept telling myself that all kids develop at their own pace and it was OK she was going a bit slower. And you know what, IT IS STILL OK!

Something Brandon always tells me when I start to get discouraged, is that Sage is her own girl, and she is developing exactly the way she is supposed to. She is our special little girl no matter how quickly or slowly she seems to develop compared to others.

Sage could hold her head up pretty well at about 2 months and she had started rolling from belly to back at about 3 months old. When her tonic seizures started at 4 months all her development stopped…at least she hadn’t regressed much (I kept telling myself). But when she was officially diagnosed with Infantile Spasms and started on vigabatrin, it basically reset her to newborn status with physical development (at 6 months old). She was even more limp than a newborn, had no muscle tone at all. We honestly don’t know how much was caused by the spasms vs the medication.

For those who don’t know, Infantile Spasms are some of the worst types of seizure activity. They cause chaotic brain waves (called hypsarrhythmias) that in turn cause brain damage. From my understanding, other seizure types mostly can cause damage when they happen but IS causes damage pretty much all the time- even when the spasms aren’t physically happening.

We decided to start Sage in developmental therapies soon after we got the IS diagnosis. She started Physical Therapy Oct. 26, 2022, and started Occupational Therapy Nov. 30, 2022. At first, I wasn’t sure what Therapy could really do for an infant…but I knew I wanted to get her the extra help and why not do it sooner rather than later.

I knew that doing exercise and activities once or twice a week wasn’t going to help her that much, so I tried to learn as they showed me what things I could do to help her progress. She has been slowly moving forward, but her biggest strides so far have been the month of February 2022, when she has had the least amount of seizures. We are still working on encouraging her to reach for toys and Reach for us, getting that dexterity I think is going to be a big milestone for her. Until she can get more coordination with her hands and arms, she won’t be ready to crawl yet.

She is getting her head control back quite a bit. She still lets it fall forward often, but she can hold it up steady and look around. I think get neck muscles get tired and it’s a habit to just let it hang, but we are working on it, and she is doing great!

We are also getting her core muscles strengthened so she can sit on her own. She is getting more and more steady when sitting supported and I have hopes she will be able to do it on her own within a few months 🤞.

She has always been very responsive to us. Watching us, responding when we talk to her, smiling, and very social. But again, February has been a huge month for us. She has started squealing, laughing, and smiling more than she ever has. It has been great to see her adorable personality manifest itself more and more.

I try hard to not expect her to do the things other kids her age are doing, I know she is not there yet, but sometimes I have a pang of sadness for her that she is still working on the “basic “milestones. For her every little improvement is a huge deal, but for others they might not even notice when their kids develops a certain skill.

I’ve just tried to tell myself we just to appreciate all the little things, we get to celebrate EVERY milestone. I want her to feel loved and know that she is perfect how she is. She does not need to do what others are doing but can do it all on her own timeline. It’s not easy all the time, but to make sure she sees herself in this positive light, I know it needs to start with me. Sage is perfect, she is exactly who she was meant to be. ❤

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 3: Day to Day

Our day-to-day life has evolved over the past 7 months, since Sage’s journey began.

When we first got Sage’s diagnosis of epilepsy and then PVNH our day-to-day life was very consumed with her seizures, doctor visits, medication regiments, and constant anxiety on my part. For that first few months I let pretty much everything go because of the stress, anxiety, and overwhelming feelings I had watching her have multiple seizures a day.

Brandon had to take up so much of the slack and he held it all together. Clover learned how to play independently and got pretty good at some learning games on the tablet. After we got a bit more “accustomed” to our new normal it got easier to start doing the basics again.

Today our day to day has gotten a bit more predictable. Since Sage had such a good month last month, she is getting into a napping schedule which has helped make our days a bit more structured.

Our typical day looks something like this:

*Sage wakes up and I give her the morning dose of meds

*Clover wakes up/breakfast

*Sage takes a nap and I have a bit of time to either clean or have time with Clover.

*Sage wakes up-lunch and play for a while

*Sage meds then nap

*Clover time and chores

*Make dinner then family time at night (reading books, games, or a movie)

*Sage night meds then bedtime

Our day-to-day activities still vary if we have doctor visits or therapy for Sage. And we still have good days and bad days, but lately we have had more good than bad 🤞🥳.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 4: Learning

Sage is learning so much every day! She will sit and watch everything we are doing, and you can just see her taking it all in. She especially loves to watch Clover and you can just see how much she wants to join in with all that Clover does.

We recently got a car toy for her that I attached to the back of the seat. If you hit part of it, they toy lights up and plays music. Sage figured out that she can kick it and make it work. You could just see how proud of herself she was!

I love watching her make those kinds of connections with her movements and the outcome. As I’ve said before, with her it really is the little things. But those little things are what makes the most difference.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 5: Play

We try to meet Sage where she is, and play goes right along with that. We had an appointment with our neurologist yesterday and he just confirmed that she is developmentally at about a 4–5-month-old development. But we already knew that, so it reflects what type of play is appropriate for her at this point.

Most of our play is us playing with or to her rather than her playing on her own. Clover is great at playing to her and including Sage in her own playing. I have seen Clover give Sage toys to have while she plays by her. I have posted a video of Clover playing with Sage and making her a doctor.

There are times I will give Sage a toy on her lap and she will entertain herself trying to grab it for a few minutes. She is learning and growing in her play just like everything else. We are so happy with how well are is doing!

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 7: Symptoms

Sage’s most obvious symptoms of her condition is her seizures. A hallmark of PVNH is drug resistant seizures.

We noticed the spasms when she was 6 weeks old and then the day after she turned 4 months old she had tonic seizures. At this point she has had multiple types of seizures including tonic seizures, tonic-clonic seizures (grand Mal seizure), atonic eye roll/ head drop seizures, Infantile Spasms, and clonic seizures.

We have been able to reduce the seizures with medication and I believe when I eat healthier (she is still exclusively breastfed) it has also helped reduce them as well.

She has also had delayed development, but we aren’t sure how much of that is from the condition itself or from the seizures.

We aren’t sure how her development will progress, but we are hopeful that she will continue to do as well as she is right now. We take things as they come and are excited to watch her learn and grow.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl #wedonttalkaboutbruno

March 8: Birthdays

It’s fitting that the subject today is Birthdays. Sage turns 11 months old today! With next month being her first birthday, I’ve started looking at options for birthday gifts for her and it is a bit hard not to get a little sad. She will get things that are developmentally appropriate for her, and her sister will most likely be opening the presents for her (Clover will love it though ❤).

Every month I do a post highlighting how she is doing and any notable things that may have happened in the past month.  So, I will just use this post as her monthly post 😊.

She is such a sweet happy baby and this past month her personality has been showing through so much more. Ever since she was born, she has had such a calm happy spirit about her, and this past month just confirms that so much! Of course, she has good days and bad days, just like everyone, but she is generally a very calm and happy girl. She is very observant and loves watching Clover as she plays and she LOVES our dog, Clay.

It Is pretty easy to get a smile and giggles out of her right now. When she wakes up, she is all smiles and gets so excited when anyone talks to her. She enjoys reading books (when we read together she is very attentive), she loves to squeal, and is getting better and better with her head control and sitting supported.

She still isn’t a big fan of traveling or changing clothes. She is awesome at taking her meds and since she has been doing so well, we have started to wean one of her meds 🤞🤞.

Sage has been such a wonderful blessing to our family. The past 11 months haven’t necessarily gone how we pictured they would, but our whole family has grown in ways we never thought possible, and that is all because of Sage. She is exactly what we needed in our family.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 9: Hospitals

I feel that we have had our fair share of hospitals. We have been in the emergency room 4 times and had 2 overnight stays. The first stay was only one night and the second was 3 days and 2 nights (but both felt ridiculously long).

The first ER visit was after Sage had her first day full of tonic seizures and was started on her first seizure medication (Keppra). The second ER visit was to start her on another medication, and that was the same time she was admitted (her first hospital ). They had to monitor her overnight because the new medication (phenobarbital) can cause lower breathing rate and heart.

We have been lucky with a super responsive neurologist, or else I’m sure we would have had quite a few more ER visits. We had multiple doctor visits and specialists visits after her first hospital stay, but then after we went on a trip to a dietitian appointment, we had two more ER visits within 3 days. The last visit ended up getting her admitting her for 3 days (the trip was super hard on her).

Staying in a hospital is never a fun thing.  Our most recent stay was less than 2 months ago. While we were there Sage had multiple blood tests done, an overnight VEEG (video EEG), had an NG tube because she was dehydrated when she was admitted, had an echo of her heart, and an ultrasound of her belly. It’s so hard to see your baby subjected to so much…but I so thankful that there are doctors dedicated to helping get her what she needs.

While we were there, she got a nice blanket, a few stuffed animals, and a cute book and lovey set. We were sent home with oxygen that she has thankfully not needed.

On top of her hospital stays she has also had multiple blood draws, an MRI, and X-rays. She is a super hard stick for blood draws and I’m getting more confident to advocate for getting the best people to do the draws.

We are pretty popular at all the doctor offices, and we have appointments for even more specialists and procedures. I don’t doubt that we are still in the beginning of our visits to hospitals and doctor offices, but it’s getting less intimidating as the time goes on.

Sage is one tough little girl and we’ve had multiple doctors and nurses tell us how great she does with their poking and prodding when it is required.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 10: Friends

Our friends have been a saving grace and heaven send for us. We live in a different state from our family, so when things started to present with Sage it wasn’t feasible to get immediate help from them and our friends really stepped in to help.

We aren’t ones to ask for help very often, so we didn’t even tell many people about what was going on with Sage until we were pretty far into her diagnosis journey. We are lucky enough to have some close friends that were able and willing to watch Clover while we had doctor visits and hospital stays with Sage.

Our friends have truly been such a blessing to us! I just want to say thank you to everyone that has stepped in to help and shown us love and support. This has been the hardest year of our lives and it’s been a comfort to know there are people close by that care about us and are willing to help.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl #friendsarefamily

March 11: Smile

I love Sage’s smiles! It was a really big tell with how good it bad she was doing based on how much she smiled. We could tell how miserable she was for a while because she had stopped smiling…

As I’ve said many times before, Sage has always been a very calm and happy baby. She was smiling at 7 weeks old but didn’t really giggle very much. Then when her seizures really became active, and we started her on seizure medication those smiles became fewer.

After our Boise trip and her month of doing so much better with having less seizures, her smiles and giggles have been more and more! Her smiles are such a comfort to me because it shows that she is continuing to do well. I love this baby girl so much and hope her smiles will continue to brighten our days!

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 12: Strength

For starters today, I can never marvel enough at how strong Sage is! We have gotten many many comments on how calm of a baby she is all while getting poked and prodded. More than once she has had a blood draw or gotten an IV and only mildly cried and one time in particular, she was stuck 4 times, and she didn’t even fuss until the last stick. Not only is she physically tough (in my eyes), but her Inner strength is more than you can imagine.

With everything she has gone through in her short life, she is such a happy girl. I know most people would say she is just a baby and doesn’t know better, but I’ve seen other babies who, after a few doctor appointments, they hate the doctor's office. Sage will still smile at the doctors, and she has had some truly traumatic visits.

She has been such a strength to me as well. On those days in the beginning where I couldn’t function beyond bare minimum daily things, her calm and sweet presence gave me what I needed to keep moving forward.

I never knew the strength it would take to watch my baby go through what she has: seizures, hospital stays, medication regiments, therapies, and general day to day. More often than not, I feel very inadequate and definitely not strong enough, but then I look at my beautiful baby and see how tough and happy she is despite her struggles. I know I have to stay strong for her!

I also want to mention how amazing Brandon has been through everything. When I was falling apart, he was the strong one. He took so much extra onto himself to keep us all afloat. He has been such a grounding and positive presence in our home.

And finally, I couldn’t have made it through the past year without Clover’s happy and fun spirit to lighten up the atmosphere, particularly when I was at the lowest. Her strength comes in the form of joy and happiness, even in the face of the struggles we have all gone through. She was there to comfort Sage during medical procedures and there to hug and comfort me when I couldn’t do more than cry. She is the perfect sister for Sage and loves her sister so much!

Strength comes in so many forms and I’m sure as we continue to fight alongside Sage our strength will change as well.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 13: Nurses

I don’t have many pictures of Sage with the many nurses that she has interacted with, but they have all been so amazing!

The many doctor appointments we’ve had all the nurses always make us feel special. With how often we do go to appointments Clover comes with us more often than not, and I really appreciate the nurses taking extra effort to include Clover.

Our last hospital stay I hadn’t slept much, and the nurses took turns holding and rocking Sage so I could get some sleep ❤. Too often I feel like nurses don’t get enough of the credit for how much they do! They care so much and are such a support.

I also have a friend that happens to be a nurse as well and she has directed me in many instances with Sage. Times I was hesitant to take Sage either to the ER or to make a doctor’s appointment, she helped me to make the correct decision.

I want to give a huge thank you to all those nurses out there that have been any part of our story, you have all been a true blessing to us.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 14: Pink

When I saw the topic for today, I was a bit stumped 😅, so I asked the person who organized #MarchOnPVNH what we should share about PINK. She said it is one of the two awareness colors for #PVNH and we can share anything we want.

So when I think of the color pink in connection with Sage’s journey so far, I mostly think of her pink clothes 😅. Sage had quite a few pink clothes, so it just so happens that she has had a lot of doctor visits/ hospital visits wearing those pink clothes.

But today as I’ve been pondering what to put in this post today, I saw this cute little teether/rattle. It’s pink, but also has the little rainbow on it. It got me thinking how rainbows only come after a storm, and we have had many super rough storms in the past year. Sage has been doing better recently than she has for a long time, she is making great strides in her development, and things are looking up for her 🤞 (knock on wood). Right now, we are seeing a rainbow in our storm.

I’m sure we will still experience many storms in the coming days and years, but it’s comforting to know there will always be rainbows to look forward to. Pink to me means seeing the good through the hard times and remembering the good during the struggles.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 15: Successes

Sage has had so many successes, especially recently. I admit it is hard sometimes to see all the improvements she has been making, but then I look back at pictures and videos from just a few months ago and it is clear to see just how far she has come.

She has been holding her head up off her chest so well lately, she is getting better and better at sitting supported, she is cooing and trying to make all sorts of new sounds, and just this past week she has discovered mirrors, and I caught her giggling at herself the other day.

I know a lot of people wouldn’t think those are big successes, but in Sage’s world (our world) they are HUGE! I’ve said it before that we are lucky to see all of the little milestones and celebrate those, but sometimes it can be hard too.

We will continue to support her, encourage her, meet her where she is, and celebrate with her no matter how big or small those successes are.

She is exactly who God has intended her to be. We love our special little girl, our miracle baby.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 16: Warrior

I found a shirt I really like that says, “My Daughter’s Fight is My Fight”. It is for epilepsy, so it still applies to Sage, but it got me thinking how no matter how hard I fight for her this is still HER FIGHT…. It is crazy hard to see her struggle and not able to just take it all away.

The more time goes on, and the more educated we get on her condition, I’m sure we will know more of what to expect. But No matter how hard things are, Sage has never stopped fighting abd she always finds something to be happy about. She is such a strong Warrior!

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 17: Siblings

I’ve been excited for this post 🥰. It is fitting that today is also St. Patrick’s Day since both my girls have “green” names.

Our lucky Clover and sweet Sage.

I was so excited when we found out we were pregnant with Sage. We knew Clover would be the best big sister! Clover has loved Sage even before she was born. She would hug, kiss and talk to my belly. Then when Sage was finally born Clover was on cloud 9 to have her baby sister finally here!

She is usually so sweet to Sage. When we are in the car and Sage starts to fuss or cry Clover will sing to her and it sometimes calms her down. Clover still gets the most and biggest smiles and giggles from Sage.

Clover has had to come to many doctor appointments, hospital visits and therapies. I know it can’t be easy for her to go to all those things, but she is such a trooper and is such a great support to her sister.

Our first time in the ER with Sage, when she was started on seizure medication, they had to do a bunch of tests that required blood draws and urine samples. Clover stood by the hospital bed and held Sage’s hand while they did the draws. She was sitting with Brandon, but when Sage started crying, she told him she needed to go be with her sister.

I know everything going on with Sage has been just as hard on Clover as it has been in me and Brandon. But she has still been such a light and happy presence. When we got the diagnosis of her brain disorder, I lost it and was crying in a closet. Clover came and found me and just hugged me while I cried.

I feel bad at times for Clover… she wants to play with her sister so badly but a lot the time it’s things Sage isn’t ready for yet. Clover is getting better and better at finding ways to include Sage in her play and I love how Sage lights up when Clover does that.

Clover has always been Very aware of what is going on and has been so great through it all. Clover is the perfect sister for Sage and in so glad they have each other!

We can’t forget to mention Sage’s dog brother Clay who loves her so much ❤ I caught a sweet moment of them today.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 18: Community

We have been lucky enough to live in a wonderful community that has shown our family so much love. It is still hard for me to ask for help or support, so it means a lot when people in our community and church reach out to offer it.

As soon as we started getting Sage’s diagnosis, I began looking for support groups on Facebook (because I struggled to ask for support from family or friends and it was easier to seek that support anonymously). I found lots of awesome groups very specific to all of her conditions, including the PVNH group that got me doing these posts all month 😊.

It has been so nice to have these digital communities that have other people who have actually gone through similar things with their children. I think one of the reasons it's so hard for me to reach out to people I personally know is because you really can’t know unless you’ve experienced it.

I’m so thankful for our local community and digital communities as well. This year has been incredibly hard, and these communities have given us that little extra strength we’ve needed.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 19: Advocacy

As soon as we began everything with Sage, even though I didn’t know it at the time, I became her advocate and an advocate for each of things she has been diagnosed with. Before all of this, I honestly had no idea what her diagnosis even was. I’d never heard of PVNH or Infantile Spasms (West Syndrome). I had heard of epilepsy, but it was a scary thing that I didn’t really understand.

Now that we are in this world of a daughter with medically complex needs, I want to spread that information. I want to make it not a scary thing for people to see and talk about and have my daughter grow up around people who aren’t going to treat her differently because of something she was born with.

I’m slowly getting more confident with talking about our journey, day to day living and becoming a more competent advocate for Sage. I’m sure as time goes on, I will learn more and more about her condition and will want to spread the awareness even more.

Speaking of spreading awareness, if you don’t already follow her page, go request to join. We would love to share our journey with you!

https://www.facebook.com/groups/375174574200541/?ref=share

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 20: Medical Help

We wouldn’t be where we are today without the amazing doctors, nurses, and therapists that have been a crucial part of Sage’s journey.

Starting with our amazing family doctor and his office that took our concerns seriously and sent us to a neurologist. Our neurologist office who was able to get us in for an EEG and first appointment the day after we called (only 4 days after we got the referral including the weekend). Then our neurologist gave us his personal number and because of that when her tonic seizures started, we were able to do what we needed to to get her on medication. I can never say enough great things about neurologist; I can tell how special Sage is to him and his whole office.

I already did a post specifically about the amazing nurses we have been blessed enough to interact with! They are truly angels! And the therapists she sees regularly are so wonderful and help me see her improvements and learn mew techniques to help her development.

Overall, all the medical help Sage has received has phenomenal! We will be seeing more specialists, doctors, nurses, and therapists in the coming weeks and months (and years) and it is such a comfort to know they all care so much about her. I’m so incredibly thankful for our medical team we have working with us to treat and find the answers behind her condition.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 21: Yellow

Yellow is the second awareness color for PVNH. I’ve never really been one to wear yellow much, but my girls look way good in it so I’ve had to get more used to dressing them in yellow.

Yellow has always been such a happy color to me, and honestly, I still struggle to stay happy and positive some days. When I think of what yellow means for us through this journey, the first things that come to mind is the sun and summer. Summer has always been such a happy and carefree time to me, but when thinking of this color in regard to everything Sage has been through its hard to connect the two…

The past year has had a lot of dark days, struggles that no one ever saw, and many negative thoughts and experiences. It has been a rough year, but the yellow happy times still somehow show through. 💛

When Sage smiles at me when she first wakes up, her sleepy happy smile, that is a yellow moment. She has so many “yellow moments”. They are the small things that bring a little of that joy, carefree feelings to our lives. The moments that bring that sunshine to our dark days.

Yellow has turned into something I look for, something that means there are bright points to all of this. Our yellow moments have been more common lately and I’m so thankful for how well she has been doing.

I’m sure as time goes on yellow will mean different things to us, but right now we will take our happy sunshine moments and treasure all the good times we are blessed to have with Sage.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 22: Life

Our life has become something we definitely weren’t planning. When we found out we were pregnant with Sage, I had a vision of what our life would look like at this point, and it doesn’t look like what I thought it would be.

To be completely honest, it has been a rough process for me to mourn what I thought our life would have been like and trying to accept the reality of what life is now.

Our life is pretty consumed by all that has happened and is happening with Sage. I try hard to give Clover special attention and try to do activities with her, especially because Sage gets so much of the attention because of everything she is going through.

Life has been incredibly hard the past year, but we had tried to keep our heads up and see the good moments as they come.

I know this is just the beginning. I hope as times goes on Sage week continue to improve and grow and things will continue to look up for her and us.

The coming years are a big unknown for us right now, and we can only pray for the best. We live life as it comes, taking things a day at a time. I look forward to the time that things will hopefully be a bit more predictable, but until then we will keep moving forward… that’s all we can do.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 23: Perseverance

I feel like the past few days I’ve been getting a bit real with the struggles we’ve experienced. Without going into detail, I’ve been letting on that we have really struggled this past year and I feel like today I should share a bit more specifically.

This morning Sage had a seizure. Whenever she has seizures, it takes me back to when her tonic seizures started and my stomach drops, every time… We have been super fortunate that in the past 2 months she has had a 15-day streak without a seizure and since then had only 1-2 seizures a week.

The reason I say we are fortunate that she only has 1-2 seizures a week (no seizures is what we are hoping for) is because before February she was having 4-8 seizures episodes a day (a seizures episodes was multiple atonic seizures in a row for about 5 minutes at a time).

When she was first diagnosed with epilepsy and then PVNH, I could barely function. Sage’s seizures were most associated with sleep, they happened either as she was falling asleep or as she woke up, so I pretty much sat in my chair and held her all day…Clover got way good at playing on her own and understanding when Sage was having seizures.

I reason I bring all of this up is because “persevering” has seemed impossible at times. I feel like I’ve only persevered because the alternative was to completely give up. You could say I was forced to preserve 😅.

When I saw the topic for today, I actually went and looked up the definition of perseverance to give me ideas on how I should address it.

Perseverance is continued effort to do or achieve something despite difficulties, failure, or opposition. Or the effort required to do something and keep doing it till the end, even if it’s hard, enduring to the end.

I’m sure as time goes on, I’ll begin to see the perseverance as a positive thing, but right now it seems so daunting… Of course I will never give up on Sage, I will keep going until the end even when it's hard, but I also know there is no end to her condition. We will have good times and hard times, and hopefully we will find a way to control her seizures so those good days will be many more than the bad.

I will continue to do whatever it takes to help Sage the best we can and will keep fighting to find answers to help her. Whatever it takes, we will endure to the end.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 24: Holidays

I’ve had to adjust my expectations a lot where holidays are concerned. The first big holiday that we had where it was eye opening to me was Christmas 2021. Sage wasn’t ready developmentally to open her presents and the gifts we gave her were pretty basic. Clover had so much fun opening the extra presents, but it was hard not to be a little sad that she wasn’t to the point she could really enjoy it like I thought she should.

It's been a process to change my expectations of what our holidays “should” look like. Sage enjoys watching Clover get excited about gifts and activities we do for holidays and in turn she gets excited too.

Just today was Brandon’s birthday and Sage loved watching the candles on the cake and even seemed interested, so she had her first small taste of cake. We are still finding ways to make holidays special and enjoyable for her, but honestly it doesn’t have to be something big. She loves the simple things, watching her sister play or open presents, watch the candles on a cake, or even just be in the fun environment we work to create during fun holiday activities.

As time goes on, I’m sure we will find more and more ways to celebrate holidays that will work for Sage and our family. Our next celebration is Sage’s first birthday! I’m excited to see how she will do with her presents and everything.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 25: Therapies

When we were only a few months into this journey, I felt pretty useless in helping Sage. I knew based on her diagnosis we would eventually be needing to out her into physical therapy and other therapies. So, after we had started her on vigabatrin in October, she was basically reset to newborn status developmentally and it was the push I needed to start her in the therapies.

When we first started, I felt like I was doing it a lot for myself…and I was skeptical of what Therapy could even do for an infant. I am so thankful we started when we did!

It has been so good for all of us; creating a bit of a schedule, something to look forward to, a positive way to monitor Sage’s progress, and helpful tools and exercises to do at home to help with her development.

Her therapists have been so great with Sage and Clover as well. They always offer things that will push Sage but not be too overwhelming for her and they always find ways to include Clover in the sessions.

It has been super helpful for me, especially when I get discouraged about Sage’s progress, they will point out the ways she is growing, learning, and getting stronger. Right now, we are still working on the “basics”, but I’m sure as Sage progresses, she will need even more therapies and will grow and learn in many ways.

I’m so thankful for Sage’s Physical Therapist and Occupational Therapist, they have been amazing for her and our whole family.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 26: Epilepsy

Today is the day to wear purple 💜 in honor epilepsy awareness (of course I don’t have anything that’s purple, yet 🤦‍♀️). Epilepsy was Sage’s first official diagnosis, and it was a very life changing day for us…

After we had gone to the ER and started her on meds, I needed a name to put to what was happening to my baby. I asked our neurologist what she had, what her diagnosis was, and he said Epilepsy. I kind of thought it would give me some kind of relief, make it not as scary, to know the name…but it didn’t.

There is such a broad spectrum of epilepsy, and many people who have it have a single type of seizure. With Sage’s brain disorder (PVNH) she has had many types of seizures. Epilepsy was our first official step into this journey and her seizures have been a very consuming part of our lives since.

With today being #epilepsyawareness I think it would be good for everyone to learn more about what epilepsy is. There are so many people, including Sage, that epilepsy is a very big part of their lives. I wish I’d been more aware of seizure disorders before, but now out of necessity I’ve been learning a lot about it.

You never know when you might see someone have a seizure, it is best to have some basic understanding of what is going on. Here is a great link to gain a bit more understanding of this disorder 💜 I encourage you to take a few minutes and read the article. Please feel free to ask me questions as well.

https://www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 27: Angels

I have no doubt that Sage has angels watching over her. There have been countless times she has been laying alone under her play yard and she starts cooing and talking, I know she is seeing her angels. We also have a picture of Jesus that she loves looking at, I just know she remembers Him.

I admit, I’ve struggled at times to be spirituality intune enough to recognize the angels in our home…but the calm safe feeling that permeates here leaves me in no doubt that we are being watched over.

I have had a few very spiritual experiences that have shown me that Sage was meant to be my daughter and that I am meant to be her mom. No matter how hard things may be, I love my little angel, Sage.

I’ve also realized that Angels can also be those here with us now. Clover has been such a blessing and angel to me over the past year. There have been so many other people that have been a heaven-send to our family through this rough time. I just want to say thank you to all those that have been that support we have truly needed.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 28: Family

I’ve struggled with this post today…it has been a bit of a hard topic for us. We love our family so much, but our family support has kind of been hit and miss throughout Sage’s journey. It has been hard living so far away from all of them, but I think the biggest struggle has been that they don’t know how to respond to something like this happening.

The "support" we have received has ranged from too intrusive, telling us what we should or shouldn’t be doing, to seemingly not interested. I get the vibe that if I don’t reach out, they think we are doing fine when really we aren’t.

The lack of positive support from our family has been one of the hardest parts of all this.

We didn’t reach out to family or friends for quite a while because we knew they’d want answers and We didn’t even have those yet. The biggest struggle is when family tried to offer solutions to Sage’s struggles when that is not their place… The best kind of support we need right now is knowing there are those we can talk to about Sage’s journey and struggles, and our struggles, without judgement or feeling like they are trying to fix it.

It Is super hard to travel with Sage right now, so that makes seeing family that much harder. But it is equally hard to have extended visits because it disrupts Sage’s environment and can cause her to have less sleep and more seizures. It’s such a hard line to walk…and we are honestly still trying to figure out how to navigate all of this.

The best support we could ever receive from family, or anyone, is words of encouragement and the trust that we are doing all we can for Sage and working continually to seek answers for her condition. Also having people reach out to us to genuinely ask how we are and being a listening ear has been the greatest comfort.

There are those that have been there for us, and been the support that we have needed. We have really appreciated those that have tried to reach out and be that loving support.

So to all our family, and friends, who may be unsure how to “help” or support us through this: send a text or call, reach out and ask how we are all doing, and just be there for us without judgement.

We truly love you all and hope we can build strong healthy relationships through this tough period. This past year hasn’t been easy on any of us, but most particularly Sage. We are all fighting with her, and she needs a positive loving environment…that is exactly what we are working to give her.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 29: Awareness

Awareness is what this whole month of posts has been about. Bringing awareness to what Sage has been diagnosed with and the struggles and experiences we have had throughout this past year.

Before we began this journey with Sage I had no idea what PVNH or Infantile Spasms (West Syndrome) was. It has been a huge learning experience for us, and if I can help bring more awareness, even a little bit, to these conditions I feel like it may be able to help others.

There are still many unknowns for Sage, and it is likely she may be diagnosed with more things in the coming years (because of PVNH). But we are taking it as it comes and hoping to be able to teach others about it all as we learn as well.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 30: Adaptation

Our life is still adapting to this trajectory we are now on. I’m sure as time goes on we will get more accustomed to what our new “normal” is going to be.

To adapt means to become better suited to our environment. I feel like the more we learn and the more we experience everything with Sage we are slowly adapting. It will continue to be a process, but we are doing our best.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

March 31: Hope

When I first started this month of posts I looked through the topics and this one hit me pretty hard. No matter what has happened or will happen, we will continue to have that hope that things will get better. We have hope that Sage can beat the odds and we can help her have a full and happy life.

It is difficult at times when we’ve been in the thick of the hard times, to find that hope. A friend of mine sent me this letter copied from another page she is on and it hit so close to home…like it was written by My future self.

“You’re a mother of two beautiful little girls. They’re kind and silly and happy. People tell you how smart they are. In restaurants, strangers stop you to comment on their polite behavior. And with each compliment, I see you. You soak the praise in. You relish in its glory. You pat yourself on the back, and you should. Live in the beauty of these kind words each day, because they’re true.

As I write you this letter, you’re sitting in a hospital exam room patiently waiting for the neurologist and a possible diagnosis for your youngest daughter.

And since I’m the future you, I know what’s about to happen. Before the doctor enters and gives you news that will forever change your life, I want to offer you some advice.

1.       It’s OK to cry. In fact, it’s more than OK. Your grief isn’t something to be ashamed of. It isn’t something you should hide. Cry in the car on your way to work. Cry in the shower. Cry into your pillow at night. Give yourself one whole day or two to do nothing but cry, and then, never spend an entirety of another day only crying. Because if you do, you’ll miss out on all the beauty around you, and there’s so much beauty, so much love, so much laughter and so much happiness.

2.       Surround yourself with positive and supportive people.  This is easy, because the not-so-supportive people tend to voluntarily weed themselves out rather quickly. Finding other mothers who are going through a similar situation is a plus. Finding people who sincerely care is an added bonus. If you find both, you’re blessed.

3.       You will make mistakes. Embrace this. Accept it. Learn from it. And move on. This is one truth about parenthood… no one Is perfect. Being a parent of a typical child or a child with special needs doesn’t change this fact.

4.       Don’t be afraid to ask questions and search for answers. Despite what other people will tell you: Google, Google and Google. Write down all the questions you have, no matter how bizarre.  You aren’t at the doctor’s office to make friends. You are there to learn and to help your child. However, don’t let your quest for knowledge consume you. Balance is key.

5.       Try not to compare. This is easier said than done. With each “Look who’s standing!” photo and every “My baby is walking!” video, your heart will ache. Remember: comparison only leads to hurt and anger. And there’s no room for those two things in the beautiful life you’re leading. Focus on all the amazing qualities and skills your daughter has. I guarantee you that list will be much longer and more important than the list of things she cannot do.

6.       Because of the diagnosis you’re about to receive, you’ll become a much different and a much better person. And since I am you, I know you don’t believe this right now, but it’s true. From this moment on, you’ll look at the world in a slightly different way: with a little more strength, with a lot more determination and with an enormous amount of hope.

In a moment, the doctor will tell you your child is not completely OK — that she will face a lifetime of possible struggles, delays and hospital visits. A lifetime of differences.

Stay strong, keep positive and believe in yourself and your child.

But, more than anything, when the doctor is done and you walk out of that exam room, I want you to re-read the very first paragraph of this letter.

Read it when you sit at the doctor’s office anxiously awaiting results. When your heart is heavy from worry and your mind is bogged down by one too many Google searches, read it. Read it during moments of happiness and times of tears. Breathe it in until your lungs are filled. Dance in it. Swim in it. Carry it with you every step of the way.

Because, guess what? Not one part of that first paragraph ever changes.  Diagnosis or not, you’re still a mother of two beautiful, kind, silly and happy little girls. And that’s what really matters. That’s the real beauty of it all.

Love,

Ali (aka the Future You)

P.S. Have I told you lately just how incredibly lucky you are?

I found this in a article. I thought I’d share. The title is “ a letter to me on the day of the diagnosis “ ❤️❤️ enjoy .”

I have hope for the beauty in our life, I have hope that even when it is hard I can take a step back and appreciate all that Sage has and will accomplish, and I have hope that Sage will continue to grow and thrive in a happy healthy home.

I think it is fitting we end this month on hope. I love the movie A Knights Tale and there is a quote that I’m going to modify just a bit 😊

“(Things) should end with hope. Hope guides me, that is what gets me through the day and especially the night.” I have hope for Sage.

#oursweetsagemarie #sagemariewebb #cloverchristina #epilepsybaby #pvnh #infantilespasms #ourspeciallittlegirl

2023

March 1: Diagnosis

Sage’s diagnosis journey started pretty early on. Everything seemed great until she was about 6 weeks old. We started noticing spasms type movements that we suspected were Infantile Spasms, and after they started increasing we took her in to our doctor. They were able to get us referred to a pediatric neurologist. At this point she was 3.5 months old and had just rolled over for the first time.

After 2 EEGs within a few days that came back normal, we hoped that these movements weren’t seizures. Then the day after she turned 4 months old she had tonic-clonic seizures (grand Mal seizures) all day. We had our first ER visit and got our first diagnosis of Epilepsy. It didn’t give us much information on what was going on or what to expect. A month later we were able to get in for an MRI that gave us one of our answers to why she was having seizures. Periventricular Nodular Heterotopias (PVNH) is a rare brain disorder where during fetal development some brain cells fail to migrate correctly and form Heterotopias that disrupts brain waves and causing many different health struggles including seizures.

When we got the diagnosis I was crushed. I felt the world slip out from under me and all my hope of Sage having a “normal” life were taken away. Since then I have come to appreciate exactly who Sage is and even if she doesn’t do what other kids do, she is amazing in her own special way.

A month later, we also officially got the Infantile Spasms diagnosis. Then, almost exactly a year after her PVNH diagnosis, she was also diagnosed with Aicardi Syndrome, which has been another answer to some of her unique struggles and why she has PVNH. I will note, only a very few people have both Aicardi Syndrome and PVNH.

Through these past 2 years have taught me that this journey is one of constant learning, growing, and adapting. As we continue down this path with Sage in sure we will have a lot more to learn and possibly even more diagnoses.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie

March 2: Milestones

 

Milestones are always a sensitive subject to a point. I always have the urge to over explain why Sage isn’t doing the things other kids her age are doing. It was easier to just brush it off when she was younger, but now that she is almost 2 years old the developmental gap between her and her peers has gotten noticeably larger.

In the beginning I was always very aware of how she was “falling behind”, but now I have learned that Sage is going to develop exactly as she is meant to and in her own time. This past year in particular she has had huge strides forward like when she started sitting on her own, started using her arms to purposefully hit things, and if we wrap her arms around a toy she will try to hold it for longer. But this year has also had an increase in seizures, medication changes, sickness and surgery that have made meeting milestones all the harder.

I like to stay in our “Sage bubble “where we are able have no expectations for how she “should” be from others. Something Brandon always tells me when I start to get discouraged, is that Sage is her own girl and she is developing exactly the way she is supposed to. She is our special little girl no matter how quickly or slowly she seem to develop compared to others.

I try hard to not expect her to do the things other kids her age are doing, I know she is not there yet, but sometimes I have a pang of sadness for her that she is still working on the “basic “ milestones. For her every little improvement is a huge deal, but for others they might not even notice when their kids develops a certain skill.

I’ve just tried to tell myself we just to appreciate all the little things, we get to celebrate EVERY milestone. I want her to feel loved and know that she is perfect how she is. She does not need to do what others are doing, but can do it all on her own timeline. It’s not easy all the time, but to make sure she sees herself in this positive light, I know it needs to start with me. Sage is perfect, she is exactly who she was meant to be. ❤

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie

March 3: Day to Day

Life with a medically complex baby can be very busy and chaotic at times. So we try to make our daily lives as low-key and relaxed as we can.

Sage does the best when she is home in her own environment, so we really try to stay home as much as possible. We have weekly therapies for Sage and me and we try to do at least one thing for Clover a week as well. We try to have only 2 days a week that we are gone from home and I have tried to pack all appointments we have into those 2 days so we can have more relaxed days the rest of the week.

We have regular doctor visits with both our pediatrician and our neurologist and specialists visits every few months that we have to travel a few hours for.

We also have to be very flexible with plans, because a day can be derailed if Sage is having a particularly bad day. Since Sage is still having seizures regularly those bad days can be more often than we’d like.

I feel like we have come a long way through this journey in the past 2 years. We are still working and adjusting our day to day life to accommodate what each of us need and hope to give Sage the best and happiest life we can.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie

March 4: Learning

When I have thought of learning I usually think of what Sage is learning, but really I think it is more about what we are learning, what Sage has been teaching us over the past 2 years.

She has taught us to appreciate every step forward, to have greater patience with ourselves and each other, and how to have greater empathy toward everyone. We have had to learn how to accept help more on our hard days, how to celebrate every moment in the midst of daily struggles, and how to see the blessings through the trials.

We have learned how to navigate this new world of Epilepsy dealing with so many types of seizures, how they look and how to stay calm in the midst of panic. We have learned so much about Sage’s RARE Diseases and all the risks associated with them. We have learned how to navigate going to multiple types of doctor visits and therapies, to help guide us on this path. Learning new techniques, exercises, and hopefully outcomes for her. We have learned how to give daily medications, working through the side effects and keeping a schedule for those.

We have learned that we have to be humble and teachable in the ever changing world that is Sage. We take things a day at a time and love watching her learn and make connections. Things can change so quickly, but we will continue to learn from Sage and do all we can to give her the best life possible!

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie

March 5: Play

Play looks a bit different for Sage than it would for typical almost 2 year old. For Sage it consists of a lot more watching others (mostly Clover) play and participating by kicking or flapping her arms. She will giggle and show interest in what she sees happening, but because of her disorders she is developmentally unable to actively participate.

Clover is amazing at involving Sage in play. She will bring Sage toys to hold or look at, show her the toys she is playing with, try to put things in Sage’s hand so they can play together, and talk to her and tell her stories while they play. Clover doesn’t see anything wrong with how Sage is during play and loves that she gets to do most of the work. Sage absolutely loves when Clover plays with her. They have such a special bond!

Most of the other play that Sage does generally has to do with therapy. We try to incorporate play into all her therapies so that it’s not a torture thing, but something fun. Clover helps with that a lot too.

We have been blessed to qualify for help in getting some adaptive play items that will help Sage to be able to participate more. We love playing with Sage and are so excited when she develops a new skill to be able to deepen that play.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie

March 6: Self-Care

Being the primary caregiver to a medically complex baby doesn’t give much time for self-care. More often than I’d like to admit, my needs get put on the back burner in exchange for what my children, specifically Sage most often, need.

With our busy schedule,  it’s hard to really take time for myself to decompress. When we first started getting Sage’s diagnosis, my decompress was online shopping. And to be honest it wasn’t that big of a help and just hurt us financially more than anything else. After the first few months of stress and shock at this new path our lives were taking, I started to try to channel my anxious energies into something else. So I started making wreaths to bring awareness to these disorders that were now a huge part of our lives. My first one was a year ago for #MarchOnPVNH. It has felt good to be able to craft something that also makes me feel like I’m supporting Sage and her disorders. I’ve never felt like a crafty person, but these wreaths have been a great outlet for me!

Brandon helps so much when he can. He often takes Sage duty when he gets home from work and especially mornings on the weekends. It helps so much to be able to get that little extra sleep. He is such a great support while also going through the same struggles I am. I try to find ways to let him have a little Self-Care as often as we can. He is an extremely selfless person, so it’s hard for him to take the time for himself, when he would rather be with his girls.

The one thing I’d love to do more often, that for me is the best “Self-Care “, is getting a massage 💆‍♀️ 😍 😌. It’s so hard, almost impossible, to leave Sage with anyone except Brandon. With her still having seizures so regularly, I still don’t feel comfortable having anyone watch her. If only there were house calls for massages 😅.

We look forward to summer when we can go outside more often and go for walks, go to the park, go on bike rides or garden as a family. I have always found being outside is great therapy for our whole family.

Sage was actually awarded a grant from the Sadie McCann Fund this past month that helped us get some items so we will be able to be outside more as a family. The Sadie McCann Fund is specifically for those kids who are diagnosed with Aicardi Syndrome and the funds go toward things that will improve the life of the child and their family. We have struggled taking Sage outdoors for any extended time because we simply haven’t had a place that she would be safe and comfortable. But now we do! I’ll add pictures of some of the items we have received.

Self-Care has been a struggle, but finding even a moment in the day to breathe, and gather my strength helps me to be the mom that Sage needs me to be.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #selfcare

March 7: Symptoms

Sage’s first symptoms began at about 6 weeks old when we first noticed her spasms. Then at 4 months old the more obvious seizures started. Since then seizures have been her biggest symptom, but we have also dealt with global developmental delay, medication side effects, GI issues, and sensitivity to sickness resulting in increased seizures.

We know that each of her disorders can have effects on multiple parts of her body and we have many specialists that keep a close eye on how she is doing. A simple thing like a sickness with a typical child could be a manifestation of something more complex with Sage. So we have to keep a close eye on her and sometimes I feel like a crazy person,  but I’d rather be cautious than regret it later. Symptoms can take all forms and we just have to watch her for any sign that something may be wrong.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #symptoms

March 8: Birthdays

In exactly one month from today, Sage will be 2 years old. The day Sage was born was an eventful but wonderful day. The doctor called in the morning to tell me I had Preeclampsia, and we were going to have a baby that day. We already had planned in a repeat c-section, so it was a pretty easy decision to come in and have the c-section a few days earlier than we had previously planned.

I had nerves, but the whole process was so healing after Clover’s birth ended with an emergency c-section and hemorrhage. We were in the hospital for less than 48 hours when Sage was born, and we brought home our perfect new baby girl.

We never would have thought a few months later our entire lives would again change, but in a way no parent wants and a way we were totally unprepared for. It was the day after she turned 4 months old (another birthday) that we got her diagnosis of Epilepsy.

When Sage turned one, she wasn’t sitting on her own at all yet, but had just started holding her head up good enough to sit supported. She didn’t have the classic one year old cake smash, and to be honest, she might not get that even this year. She just doesn’t like to use arms and hands well enough just yet. But we still got to celebrate her first birthday with cupcakes and ice cream. It was actually her first experience with both (she was still mostly breastfed when she turned 1).

We’ve had to adjust our expectations for Sage’s birthdays. We don’t get her the toys other kids her age get. She isn’t ready for them yet. Clover gets to open her gifts (which she loves to do 😅), and her interest in “birthday things” just isn’t there as much as what other kids most likely have.

We are so excited for her to be turning 2! There are many kids with her specific disorders (mostly Aicardi Syndrome) that may not make it to 2 years old. Every day with Sage is a blessing, but on her birthday, we get to celebrate her all that much more! She is truly a miracle.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #birthdays

March 9: Hospitals

I feel we have had our share of hospitals. Sage’s journey really began with our first ER visit when she was just 4 months old. After that we have had multiple other ER visits, mostly due to sickness because she is so high risk we’d rather be safe than sorry.

She has had 3 overnight stays. The first was for the beginning of a medication because of the risks of breathing problems when starting it, one ER visit turned into a 3 day 2 night stay, and her most recent was when she had her VNS surgery the end of January.

She has also had regular blood draws, an MRI, CT scans, and lots of X-rays all done at hospitals. We also have specialists we see that we have to go to the hospital for as well.

With going so often, you’d think I’d get used to it, but I haven’t. I still get anxiety whenever we have to go, but I will always do what I have to do to give Sage her best chance.

I’m so thankful fit modern medicine that has allowed us to give Sage the best care possible and it has given us so many answers to her condition that we would never know otherwise.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #hospitals

March 10: Friends

Before I really get into today’s post I have to share how Sage has really been doing the past week. In the midst of having COVID last week, it hit Sage extra hard, so much so we had our first ever 911 call after she had seizures for over and hour. Our neurologist agreed to adjust her VNS, he came to our car and did the adjustment so we wouldn’t expose COVID  to others. After that adjustment we didn’t see Any obvious seizures for 8 DAYS! That is the longest she has been seizure-free in probably almost a year. Despite being super sick, I’d say I think the VNS has helped and it gives me hope she will continue to do better. She did have a focal seizure early this morning, but even that lasted less time than normal.

Friends have been a heaven-send to us through the past 2 years. We live far from any family, so our friends have stepped up for us in many ways. In the beginning we have had friends who have watched Clover for us at times when Sage was in the hospital or we had other appointments that we couldn’t take her. We have had meals brought to us during rough times and sickness. I have a hard time asking for help, but I’m so thankful for those friends who reach out to us and offer.

Some unexpected friends I’ve gained over the past few years are through the Facebook groups I’ve joined specific to get newfound disorders. I’ve been able to form wonderful friendships with those who are walking a similar paths with their kids. It’s so comforting to have someone who truly understands what this life is like and I can go to for advice or to vent in a different way than I can with others.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #friends

March 11: Smile

I can never get enough of Sage’s smiles! It’s usually pretty easy to gauge how she is feeling based on how often she smiles. When she has been going through rough seizures or sicknesses her smiles are hard to come by.

The past week or so her smiles have been lighting up the room! With her finally getting over being sick and her seizures doing better as well it has been a welcoming sight. She usually has seizures soon after she wakes up, but since she has had a bit of relief from seizures she smiles so big as she wakes up now. You can just tell she is just as relived as we are.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #smile

March 12: Strength

Sage is the strongest person I know! When thinking of what to say today I looked back at my post from last year, and it still rings so true today.

The past 2 years have been some of the hardest times we’ve ever experienced and we’ve had to find reserves of strength we never knew were possible. On those days in the beginning, where I couldn’t function beyond bare minimum daily things, her calm and sweet presence gave me what I needed to keep moving forward. With everything she has gone through in her short life, she is such a happy girl and has been such a strength to me as well.

I never knew the strength it would take to watch my baby go through what she has; seizures, hospital stays, surgery, medication regiments, therapies, and general day to day. More often than not, I feel very inadequate and definitely not strong enough, but then I look at my beautiful girl and see how tough and happy she is despite her struggles. I know I have to stay strong for her!

I also want to mention how amazing Brandon has been through everything. When I was falling apart he was the strong one. He took so much extra onto himself to keep us all afloat. He has been such a grounding and positive presence in our home. He has always had the strength to accept Sage exactly as she is without question.

I couldn’t have made it through the past 2 years without Clover’s happy and fun spirit to lighten up the atmosphere, particularly when I was at the lowest. Her strength comes in the form of joy and happiness, even in the face of the struggles we have all gone through. She was there to comfort Sage during medical procedures and there to hug and comfort me when I couldn’t do more than cry. She is the perfect sister for Sage and loves her sister so much!

Strength comes in so many forms and I’m sure as we continue to fight along side Sage our strength will change as well. Sage is our hero!

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #strength

March 13: Nurses

We have been so blessed to have some truly wonderful nurses care for Sage. We have doctor appointments often and the nurses are so kind, always involve Clover, and make us feel so special and loved. The nurses at the doctor’s office know us well, but even those we don’t know well, the ones that cared for us during hospital stays, are amazing people as well.

I try to respect privacy, so I don’t have many pictures of Sage with her nurses (I might need to ask for permission to take a few 😅). They are so special to us and have made these experiences so much more bearable. Those at our neurologist office have gone above and beyond for us, fighting insurances, getting medications filed, and always being that extra support for us. You know who you are 🥰😄 and you are such a blessing to our family.

We are lucky enough to have friends who are also nurses, and they have been such a great help in those instances when I’ve been unsure of what to do or have questions. They have been those who have regularly checked in on us, and have been so kind and thoughtful to our family over the past 2 years.

Nurses are such heroes and have been a true strength to me as we have gone through this journey in finding answers for Sage. I want to give a huge thank you to all those nurses out there that have been any part of our story, you have all been a true blessing to us.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #nurses

March 14: Pink

We LOVE pink! I guess that comes with having 2 girls. Pink is the awareness color for not only PVNH  but also Aicardi Syndrome. The color pink has become so much more than a color in our house. It represents these rare disorders that Sage was born with. It represents the strength she has have, to go through all the struggles she has endured in her short life. It is a powerful color that we wear with pride to not only represent Sage disorders, but also to express our happiness that we have Sage in our lives. (It is also Clover’s favorite color 😍).

For daylight savings, the Webb family have a tradition that all the girls receive gifts from Sunny. (Because we lose an hour of sleep, we need extra help to be happy 😊). Brandon spend all day Saturday making this toy box for our girls, and of course it had to be pink!

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #pink

March 15: Successes

Sage has had so many successes, especially in the past year. She has successfully gone through surgery, so many medication changes, and she still smiles and giggles despite having so many seizures. More recently, she has gone from having 3-8 seizures a day to only having 2 in the past 2 weeks with an 8 day stretch of no seizures!

She has gone from not being able to hold her head up for long, to sitting unsupported for a few minutes at a time. She has gone from not using her arms or hands at all to trying to purposefully hit things.

These strides may not seem huge for most children, but for Sage, they have been incredible! They have improved her life and given us so much hope for her.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #successes #vns

March 16: Warrior

Sage had a seizure today. After having days without seizures, then having 2 days in a row (one each day), I’m reminded of how incredibly hard this can be. Sage fights so hard each and every time she has a seizure and still can come out of them smiling. She is the strongest Warrior I know.

She is an #aicardiwarrior, #pvnhWarrior, and an #epilepsywarrior. I love the saying “My Daughter’s Fight is My Fight”, because we will always be fighting for her, and with her. We will fight to find the correct treatments that will work for her, we Fight for her to keep growing and developing, we Fight for her to hopefully one day be seizure free and have as few symptoms as possible, and we fight to bring awareness to these rare disorders that she endures daily.

But the hard truth is, no matter how hard we fight this is still HER FIGHT. She is the epitome of what a warrior should be. Strong in the face of adversity, finds joy no matter the circumstances, and keep moving forward despite the odds. We will keep fighting with her, and she is our strong little warrior!

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #warrior

March 17: Siblings

I’ve been excited for this post 🥰. It is fitting that today is also St. Patrick’s Day since both my girls have “green” names.

Our lucky Clover and sweet Sage.

Clover is the BEST sibling Sage could ever ask for! Even from the very beginning, Clover has been just as involved as we are with Sage’s diagnosis journey. Our first time in the ER with Sage, when she was started on seizure medication, they had to do a bunch of tests that required blood draws and urine samples. Clover stood by the hospital bed and held Sage’s hand while they did the draws. She was sitting with Brandon, but when Sage started crying she told him she needed to go be with her sister.

Since then she had gone to most doctor visits, therapies, blood draws, and other procedures we’ve had to do for Sage. Just today we had an appointment and I gave Clover the option to stay home with her daddy and she decided to come with me and Sage to the appointment still. She loves to be involved with it all.

Clover can even recognize when Sage is about to have a seizure, and she is only 4 years old.  When Sage is having a seizure Clover is right there with us, comforting her.

Clover does such a good job at playing with Sage. Sage still isn’t developmentally able to play like most kids, can’t hold toys, or sit independently long enough to be more involved in the play. Clover will bring Sage toys and help her hit them or hold them, she will talk to her and show her other toys, and she will tickle Sage and I love how they laugh together.

We got so lucky to have Clover and her amazing ability to understand things at a level beyond her age. She has always loved Sage more than anything and I love the relationship they have.

And I can’t forget Sage’s dog brother Clay and how sweet he can be with her as well. He is gentle and calm with both our girls . He is getting older so we are soaking in all the time we have left with him.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #siblings

March 18: Community

I absolutely love the community we live in! We don’t have many neighbors close by, but still have wonderful friends and supports within the community and from our church as well. Our families live pretty far away, so as things have progressed with Sage we have had to learn to ask for help and rely on those close to us for that extra support. And they have completely risen to our aid. We have been lucky enough to have some close friends that have helped us in so many ways and made things with Sage a little more bearable.

It Is still hard for me to ask for help or support so it means a lot when people in our community and church reach out to offer it.

As soon as we started getting Sage’s diagnosis I began looking for support groups on Facebook (because I struggled to ask for support from family or friends and it was easier to seek that support anonymously). I found lots of awesome groups very specific to all of her conditions, including the PVNH group that got me doing these posts all month 😊.

It has been so nice to have these digital communities that have other people who have actually gone through similar things with their children. I have also been lucky enough to make some truly special friendships through these groups as well!

I think one of the reasons it’s so hard for me to reach out to people I personally know is because you really can’t know unless you’ve experienced it.

I’m so thankful for our local community and digital communities as well. This journey has been incredibly hard and these communities have given us that little extra strength we’ve needed.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #community

March 19: Advocacy

I’ve always been intimidated when it comes to being an advocate for Sage. In my mind an advocate is someone who goes above and beyond to bring awareness, doing fund raisers for their cause, creating a community of other advocates, and seem to have a superhuman ability to “do it all”. But I’m nowhere near that caliber yet, but one day I hope I can be!

Not long after we began Sage’ journey I started a Facebook group and Instagram page dedicated to her and the day-to-day life we experience. ( https://www.facebook.com/groups/375174574200541/?ref=share )

It really was my first step in truly becoming an advocate for Sage and all her diagnoses. It has been a huge learning curve for me, but I’ve learned to speak up for what I know is best for her, even when it comes to medical professionals.

Just recently I’ve felt Sage needed something extra, so I’ve gotten her into a specialized intensive program that we have to pay for out of pocket (hopefully insurance will reimburse, but not for sure). I believe this is also being an advocate for her no matter the cost, we will always do all we can to give her the best life possible.

Before all of this, I honestly had no idea what her diagnosis even was. I’d never heard of PVNH, Infantile Spasms (West Syndrome), Aicardi Syndrome, or Lennox-Gastaut Syndrome was. I had heard of epilepsy, but it was a scary thing that I didn’t really understand.

Now that we are in this world of a daughter with medically complex needs, I want to spread that information. I want to make it not a scary thing for people to see and talk about and have my daughter grow up around people who aren’t going to treat her differently because of something she was born with.

I’m slowly getting more confident with talking about our lives and being open with everything to do with Sage. There is still so much more I want to do to bring awareness to these disorders,and in she ,t will come with time. If you don’t already, please go follow Sage’s page and follow our updates beyond this month. 💗

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie

March 20: Medical Help

I don’t know where we would be without the help of the wonderful medical professionals that have cared for Sage. We are so incredibly thankful for our family doctor that took our concerns seriously early on when we suspected Sage was having Infantile Spasms and helped us to get in to the neurologist. Our neurologist and his office have been super responsive and they work with us daily to find the correct treatments for Sage.

We see many other specialists such as the neurosurgeon who did Sage’s VNS surgery, geneticists, optometrist, pulmonary specialist, GI specialist, now even a chiropractic specialist, and of course her various therapists.

With rare diseases like Sage’s, it’s common to have multiple specialists and possibly a doctor for just about every bodily function. We are so thankful for Sage’s extensive medical team. I’m thankful fit the doctors that communicate with each other to be able to treat all of Sage rather than just their one specialty. Sage is a complex girl and we have been so fortunate to have all the medical help we have received.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #medicalhelp

March 21: Yellow

Whenever I think of the color yellow the first thing that comes to mind is sunshine and summer. But since Sage’s journey began and she was diagnosed with PVNH at 5 months old, the color yellow has taken on a lot more meaning.

Yellow is the second awareness color for PVNH. As the past 18 months have passed (18 months since she was diagnosed), this color has come to mean hope, seeing the things to be thankful for during the hard times, and happy yellow moments through it all.

The past two years have had a lot of dark days, struggles that no one ever saw, and many negative thoughts and experiences. It has been a rough journey, but the yellow happy times still somehow show through. 💛

When Sage smiles at me when she first wakes up, her sleepy happy smile, that is a yellow moment. Most of the time Sage has seizures soon after she wakes up, so when she smiles instead it is the best thing ever!

She has so many “yellow moments”. They are the small things that bring a little of that joy, carefree feelings to our lives. When she giggles at Clover,  purposely hits and object or us, and when she has those strides forward however how small. The moments that bring that sunshine into our days.

Yellow has turned into something I look for, something that means there are bright points in every day, if we only look for them. I’ve even caught myself buying more yellow clothes for Sage, especially when things are feeling particularly hard.

I’m sure as time goes on yellow will mean different things to us, but right now we will take our happy sunshine moments and treasure all the good times we are blessed to have with Sage.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #yellow

March 22: Life

Life is amazing! It has been an adjustment to see things this way and simply accept this as how our life is. I would have never imagined this is what life would be. Just 2 years ago I was still pregnant with Sage, just a few weeks from delivering this beautiful baby. If you would have told me then that this is what our lives would look like I wouldn’t have believed it.

The past 2 years have been a huge learning experience and it continues to be that way even today. It is a lot of trial and error, learning what things trigger seizures (so we can avoid them), what helps stop seizures (meds, techniques, essential oils).

A friend of mine doing these posts (also has a daughter with PVNH), described what a day in our lives look like, and I’d like to do the same.

I’ll take today as the example 🙃. Today was unusually busy, but to be honest we have even busier days than this a few times a month. Sage hasn’t been sleeping the best, and we suspect her newest seizure medication, so we are weaning it now. She still woke up a few times last night and didn’t want to go back to sleep easily so I have a bed made on our couch that we sleep on more often than not. Sage usually has seizures soon after she wakes up, and today was the same. She had a short episode of head drop seizures, that’s what got us to the couch.

We were on that couch by about 7 am (we usually sleep until after 8 at the earliest). She watched Little Baby Bum while I tried to doze for a few more minutes. Clover got up and I got both girls some breakfast. I have to feed Sage everything, she can’t do it herself yet,  so that takes the extra time. I almost always feel rushed to get out the door and we are usually late to most appointments😅.

Today was a therapy day, so we had to be out to door for that appointment and barely made it on time. We also had a chiropractor appointment this afternoon, but had a few hours between appointments, so we tried going to a new activity place – Kidstown. I’m sure in other circumstances it would have been a better experience, but with it being spring break it was pretty crazy, lots of kids and LOUD. This goes back to what I was saying about learning Sage’s triggers…well, loud noises is one of them.

I had promised Clover we could go and I knew she was excited for it, so we stayed. Lo and behold, Sage had quite a few head drop seizures while we were there. Being in this life we have had to learn how to deal with her having seizures in public. I don’t like it, but I have the instant reaction to hide it from people, like it will make THEM uncomfortable 🙄. I tried to put her noise headphones on after we had been there for a bit (I had forgot I bought them) but they were too tight so I took them off.

I talked Clover into leaving by saying we’d try to go to a park in the way to the chiropractor, so we tried 🤣. The park was very snowy and the slide made her wet. It was probably our fastest visit to a park ever.

We got to the chiropractor and soon after she started another episode of seizures. But these ones were pretty hard drops and she cried between each one. I was swiping her magnet, but you can only do that once a minute and she was having drops about every 5-10 seconds. The doctor came over and after she wasn’t stopping for a bit he did a cranial adjustment (I’d never seen it done before), and it helped to stop the seizures in less than a minute. Another learning opportunity.

We got home, dinner ready, and Sage was able to have her first real nap all day. We usually don’t ask make it to bed until after 11 pm. It’s a great night if I’m in bed before midnight 😴 🥳.

Today was a bit tougher than others can be, but I still feel that it accurately portrays what our lives look like. We take every opportunity we have to just stay home, Sage usually does best at home. Being so busy is also another trigger for her, but sometimes it’s unavoidable.

One thing I know for sure is that this baby is so resilient, and Clover is so great at going with the flow and understanding when Sage requires the extra attention. We still try hard to do special things for Clover.

Our lives have dramatically changed since Sage was diagnosed. But we have learned so much and grown in so many ways. THIS IS OUR LIFE. Sage and Clover are our lives. It can be hard, but I wouldn’t trade It for anything, because that would mean trading Sage and I will never stop fighting this fight for her.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #life

March 23: Perseverance

Perseverance seems so daunting…so exhausting. Especially when we’ve had the day we had today. Sage has had 5 pretty rough seizures today, 4 head drop episodes, and 1 focal seizure. I thought she was doing so well this morning with only 1 seizure, but then within just a few hours, she had quite a few more. It’s enough that we are now increasing her meds that we were going to be weaning.

There are days that it takes everything we have to just make it through that one day, or even 1 hour at times. So, to think of persevering long term seems like so much on these hard days.

Perseverance is a continued effort to do or achieve something despite difficulties, failure, or opposition. Or the effort required to do something and keep doing it till the end, even if it’s hard; enduring to the end.

Of course, I will never give up on Sage, I will keep going until the end even when it’s hard, but I also know there is no end to her condition. We will have good times and hard times, and hopefully, we will find a way to control her seizures so those good days will be many more than the bad.

In a few years I’m sure we will look back and see how incredibly strong we were and how we preserved, but it’s so hard to see it in the moment.

I will continue to do whatever it takes to help Sage the best we can and will keep fighting to find answers to help her. Whatever it takes, we will endure to the end.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #life

March 24: Holidays

It’s fitting that today is Holidays because we are celebrating a holiday today! Today is Brandon’s birthday 🎂 🥳.

We have had to learn to adjust our expectations and be more flexible when it comes to holidays. Just today sage had to go to 2 doctor offices and we weren’t able to do much for Brandon’s birthday because after we got home Sage was struggling.

Past holidays have been hard because she isn’t developmentally where other kids her age are. Her 2^nd birthday is in just a few weeks and the toy choices are limited because she still isn’t and to play with other toys we’ve gotten her and there are only so may stuffed animals you can get a baby 😅.

Clover loves to open all the presents for Sage, but there is still that pang of sadness that she isn’t able to do it yet. We have had to stay home and miss family get together in holidays because traveling is so hard on Sage and usually causes more seizures.

The next holiday will be Easter. Sage can’t run and pick up Easter eggs, but Clover is so great at still including Sage in all the fun!

Holidays definitely look different now, but we try to make them as special as we can for both our girls.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #holidays

March 25: Therapies

Sage started in Physical Therapy and Occupational Therapy at 6 months old. She was rolling over at 3.5 months old and continued rolling even after her seizures started. But when we had to start her on a medication specifically for her Infantile Spasms, it resolved the spasms after just 2 doses but it also took her developmentally back to newborn status. She could no longer hold her head up, roll, or do many independent movements after that. And it’s been an uphill battle since then.

We got her in to her therapies soon after she was 6 months old and these ladies have been so amazing with Sage! They have taught me techniques to use at home to help with her development and been so patient and understanding when we can’t make it because we are having a rough day (or month 😅).

Sage has improved so much in the past 18 months. Going from newborn status to sitting independently for a few minutes at a time and starting to use her arms more. I know to most people that doesn’t seem like much progress, but despite all her seizures, medication side-effects, sicknesses, and surgery she has come so far!

Sage’s therapists have become such good friends to me and always include Clover in the activities. They have been also helping us get some much needed therapy items through DD Services (help you get things insurance won’t pay for). We are fighting right now for a few items they have denied that we still feel Sage would definitely benefit from, so hopefully in the next little while we can get those (like a highchair that reclines because she can’t sit long enough in a regular highchair, she slips sideways 😕 or a mini indoor play gym to help with her arm usage and strength).

We are also in the process of getting her a stander to help with her leg strength and bone health since she doesn’t stand on her own yet (but insurance is covering that one 😅).

The other therapy we started her in that I’ve mentioned in previous posts is her chiropractor. I’ve already learned so much from them as well. Technique to help her during a seizure and basically how the body is so interconnected that we need to really focus on every part to treat Sage most effectively.

I usually forget to mention my therapist as well. When we started this journey and Sage was first diagnosed, I was super devastated! I started seeing a therapist to help me process what was going on and was able to get validation for feelings I was having that were hard to admit. I got the extra support to be open with other emotions that it all brought up and how to express to those who couldn’t understand how I have been feeling. It has been super helpful for me!

These therapists have been such a blessing to us and Sage. They have taught me so much and I’m sure she will have many more therapists come into our journey as the years go by. Thank you all for all you have done for Sage and our family!

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #therapy

March 26: Epilepsy

Epilepsy used to be a scary word to me, but now it is a part of my daily life. Sage has actively had seizures the majority of her short life and I have learned so much more than I ever thought I would about seizures, seizure medication, types of seizures, things that cause seizures, triggers that can make them worse, environmental influences, and so much more!

Today is #epilepsyawarenessday or Purple Day. So of course we all forgot to wear purple 🙃. Since I found out the epilepsy awareness color was purple I caught myself buying more purple clothes and toys for Sage. Epilepsy was Sage’s first official diagnosis. We suspected Infantile Spasms (which also falls under the epilepsy umbrella, seizure types) before she was even 3 months old, but that diagnosis came later.

Seizures are a constant part of our days and a cruel reminder of everything going on with Sage. The majority of people diagnosed with PVNH  have seizures at some point in their lives, but the majority don’t start having seizures until teen years or even later. But with her Aicardi Syndrome (which is actually her cause of PVNH) those seizures always start as an infant, and are usually hard to control.

Sage has been on, and technically failed, 9 seizure medication in her short life. And one surgery to place a Vagus Nerve Stimulator to help control her seizures. We are still adjusting the VNS and it can take up to a year to find the correct settings for her.

To fail a med it means that she has continued to have seizures despite getting the medication to max dose or having to wean medication for other reasons.

Seizures look different for each person and there are so many different types. Sage has experienced at least 6 different types: Infantile Spasms- full body tightening for a split second and coming in clusters (she had episodes of these for over an hour at a time- over 10 a minute), tonic-clonic seizures, tonic seizures, clonic seizures, head drop seizures- associated with Lennox-Gastaut Syndrome, focal seizures- affecting both left and right, Generalized tonic-clonic seizures- usually happened before or after a focal.

This weekend has been particularly full of seizures for Sage… since Friday she has had 14 head drop seizures and 1 focal seizure…. 7 of those were just today 🥺😕.

Sometimes it hits me how crazy our lives are, seizures have become a “normal” thing for us to see in a daily basis. But I will say, no matter how many times I see Sage have seizures, it never really gets easier. I have learned how to cope during her seizures, learned techniques that help her come out of them a bit quicker- sometimes, learned she usually overheats during them so we have to take her somewhere cool, found certain oils that should help, and just learned how to stay calm and how to best track them. But every once in a while I break, and just hold her and cry as my baby struggles.

Sage has been developmentally delayed since her seizures started at 4 months old. She has had huge set backs and awful side effects from medications, but she is such a fighter! She still finds the strength to smile and giggle after she has seizures. She continues to work so hard to gain better control of her own body and she loves being involved in everything we do. She takes it all in.

I would love to see a cure for epilepsy, to see Sage have some relief from the constant seizures. But for now I just pray we can find the correct medicine combination to give her some relief.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #epilepsy

March 27: Angels

Angels have come in all shapes and sizes through this journey. Sage is seriously an angel on earth. I feel confident that she was sent here, not for herself but for everyone she meets. Anyone who meets her, in person or even just from her page, can’t help but love this beautiful baby. She shows such a strength and peaceful presence despite everything she goes through.

She shows me daily that I can forgive myself for my short comings, be more patient than I thought I could be, and give more of myself that I thought I had.

Another angel that has been the biggest strength to me is Clover. She is such a caring and understanding girl, way beyond her four years. When we first got Sage’s diagnosis of PVNH I was devastated. I didn’t know how to react and actually went into a closet and cried. Clover came and found me and just gave me the biggest hug and let me cry. She did the same thing for me just today, when I was having a hard time with how many seizures Sage has been having. She is truly a very special girl!

I’ve had friends reach out at just the right moment, help watch Clover when things were beginning and I didn’t know how to wrangle two kids, and even those who just listen. I’ve gotten better at saying how it really is and allowing myself to ask for help. And all those that have been there for me are truly angels and I couldn’t have made it this far without you! You know who you are 💜💗. Thank you so much to those who have for being there for me in the hardest time of my life, for reaching out when it was too hard for me to ask, and for the simple things that give a lift to my days. It has all be so appreciated!

I also know that Sage has a special connection to Heaven. I fully believe that Sage gets extra help and strength from her own personal Angels sent from God to help her endure.

Sage’s condition can be a fatal one…and I try hard to not think that way, but the truth is she is at a much higher risk of passing than others. I only hope we will get many more years with her and be able to watch her learn and grow and have a full life. She is such a special girl and deserves so much! We love our angel baby.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #angels

March 28: Family

All of our extended family live 2-30 hours away from us, and in different states. So when we begin this journey with Sage it wasn’t easy to get (or even ask for) help from them. There was also a lot of uncertainty and it was so hard to explain to others not personally going through it daily, what we were going through and how our lives had began to change.

Many things became more difficult, like traveling or even having visitors. We had to narrow our focus to help us cope with how drastically our lives had suddenly changed. Because of this there are still family members who have never met Sage in person, sadly.

Brandon told me in the beginning that these types of things can tear a family apart, and he did great from the very beginning at keeping our relationship strong, especially when I could barely take care of our basic needs he picked up all the slack and kept us going.

Our immediate family is stronger than ever! Clover is just as involved with everything Sage is going through as we are. Just today Sage was having seizures and I had to walk away for just a second to get something and Clover told me “I’m going to stay right here and watch Sage. If I see her head drop I’ll push the lap button (I time her seizures on my phone and lap it every time she has a drop). And if you tell me to, I’ll swipe the magnet.” 🥺🥰

I’m so incredibly proud of her and how perceptive she is. She comes to most doctor appointments and therapies with us and is so patient while we are there.

I’ve had a few of our neighbors and friends offer to watch our girls so Brandon and I can get a bit of a break, but I’m not ready for that. I’d be so worried Sage would have a seizure and to be honest we enjoy being together as a family. We have gone through every step of this journey as a family and really it’s hard for others to fully understand what we go through except us. We can try to explain it, but until you’ve lived it daily it is just so hard to grasp.

I hope one day all of our extended family can know Sage and until then I try so hard to share her journey on her Facebook page and hope our family follows it. We love you all and are doing what we feel is best for Sage. Right now her needs come above everything else.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #family

March 29: Awareness

Awareness is what this whole month of posts has been about. Bringing awareness to what Sage has been diagnosed with and the struggles and experiences we have had throughout the past 2 years.

Before we began this journey with Sage, I had no idea what PVNH, Infantile Spasms (West Syndrome), Aicardi Syndrome, or Lennox-Gastaut Syndrome was. It has been a huge learning experience for us, and if I can help bring more awareness, even a little bit, to these conditions, I feel like it may be able to help others.

There are still many unknowns for Sage, and she has been diagnosed with a number of other things in just the past year, but epilepsy and PVNH will always be where this journey began. But we are taking it as it comes and hoping to be able to teach others about it all as we learn as well.

In an effort to spread the awareness of Sage’s disorders a little more, I have started making wreaths with the awareness colors and disorder names. I’ve offered to make personalized wreaths for a few people, and I’m in the process of making some for Sage’s grandparents. But if there are any other special needs or Rare Disease families out there, I’d love to highlight your little ones with a wreath. Just message me for prices. 💗💛💜.

I’ve tried to keep our journey open and honest on Sage’s page https://www.facebook.com/groups/375174574200541/?ref=share. If you would like to continue these updates about Sage after this month, please go follow her page.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #awareness

March 30: Adaptation

Our life is still adapting to this trajectory we are now on. To adapt means to become better suited to our environment.

The past 2 years have been constant adjusting, learning, going with the flow, and being flexible to what each day brings. I guess you could say that is us adapting to this life 😅. We have learned how to endure our baby having seizures regularly, medication regiments and their side effects, many doctor appointments, and accepting Sage exactly as she is.

In an effort to help Sage, we have been trying to get some adaptive equipment for her to help her have her best life possible. We have been able to get a bath chair for her to be able to sit in the bath and play since she can’t do it on her own yet, a positioning seat to help build her endurance in sitting independently, and a really cool harness that will allow us to help her feel what is like to walk 🥰(it’s a bit too big for her right now, but it will be awesome to use soon). We are in the process of getting her braces to help support her legs and a stander to support her to bear weight on her legs more.

We are still trying to get a few more items that we feel will help her to adapt to life and help with her development, we really hope they will be approved by the program that is assisting us in getting these items. If not, we may need to purchase these out of pocket because we feel she could definitely benefit from them.

Adaptation to being a special needs family is something that has always seemed so daunting. But we are slowly finding our footing. I’ve been getting more confident with following my instincts and finding resources to help Sage every way we can. There is still so much to learn, and we are constantly adapting to our day to day life.

#MarchOnPVNH #pvnh #aicardisyndrome #seizures #infantilespasms #epilepsybaby #sagemariewebb #oursweetsagemarie #seizures #Adaptation

March 31: Hope

I’ve thought a lot about what I should write for today’s post, and then the memory from what I wrote last year came up on Facebook. And to be honest…it’s just as true today as it was a year ago 💜💗💛. So instead of trying to reword the same feelings I’m just going to share it again.

When I first started this month of posts I looked through the topics and this one hit me pretty hard. No matter what has happened or will happen, we will continue to have that hope that things will get better. We have hope that Sage can beat the odds and we can help her have a full and happy life.

It is difficult at times when we’ve been in the thick of the hard times, to find that hope. A friend of mine sent me this letter copied from another page she is on and it hit so close to home…like it was written by My future self.

“You’re a mother of two beautiful little girls. They’re kind and silly and happy. People tell you how smart they are. In restaurants, strangers stop you to comment on their polite behavior. And with each compliment, I see you. You soak the praise in. You relish in its glory. You pat yourself on the back, and you should. Live in the beauty of these kind words each day, because they’re true.

As I write you this letter, you’re sitting in a hospital exam room patiently waiting for the neurologist and a possible diagnosis for your youngest daughter.

And since I’m the future you, I know what’s about to happen. Before the doctor enters and gives you news that will forever change your life, I want to offer you some advice.

1.       It’s OK to cry. In fact, it’s more than OK. Your grief isn’t something to be ashamed of. It isn’t something you should hide. Cry in the car on your way to work. Cry in the shower. Cry into your pillow at night. Give yourself one whole day or two to do nothing but cry, and then, never spend an entirety of another day only crying. Because if you do, you’ll miss out on all the beauty around you, and there’s so much beauty, so much love, so much laughter and so much happiness.

2.       Surround yourself with positive and supportive people.  This is easy, because the not-so-supportive people tend to voluntarily weed themselves out rather quickly. Finding other mothers who are going through a similar situation is a plus. Finding people who sincerely care is an added bonus. If you find both, you’re blessed.

3.       You will make mistakes. Embrace this. Accept it. Learn from it. And move on. This is one truth about parenthood… no one Is perfect. Being a parent of a typical child or a child with special needs doesn’t change this fact.

4.       Don’t be afraid to ask questions and search for answers. Despite what other people will tell you: Google, Google and Google. Write down all the questions you have, no matter how bizarre.  You aren’t at the doctor’s office to make friends. You are there to learn and to help your child. However, don’t let your quest for knowledge consume you. Balance is key.

5.       Try not to compare. This is easier said than done. With each “Look who’s standing!” photo and every “My baby is walking!” video, your heart will ache. Remember: comparison only leads to hurt and anger. And there’s no room for those two things in the beautiful life you’re leading. Focus on all the amazing qualities and skills your daughter has. I guarantee you that list will be much longer and more important than the list of things she cannot do.

6.       Because of the diagnosis you’re about to receive, you’ll become a much different and a much better person. And since I am you, I know you don’t believe this right now, but it’s true. From this moment on, you’ll look at the world in a slightly different way: with a little more strength, with a lot more determination and with an enormous amount of hope.

In a moment, the doctor will tell you your child is not completely OK — that she will face a lifetime of possible struggles, delays and hospital visits. A lifetime of differences.

Stay strong, keep positive and believe in yourself and your child.

But, more than anything, when the doctor is done and you walk out of that exam room, I want you to re-read the very first paragraph of this letter.

Read it when you sit at the doctor’s office anxiously awaiting results. When your heart is heavy from worry and your mind is bogged down by one too many Google searches, read it. Read it during moments of happiness and times of tears. Breathe it in until your lungs are filled. Dance in it. Swim in it. Carry it with you every step of the way.

Because, guess what? Not one part of that first paragraph ever changes.  Diagnosis or not, you’re still a mother of two beautiful, kind, silly and happy little girls. And that’s what really matters. That’s the real beauty of it all.

Love,

Ali (aka the Future You)

P.S. Have I told you lately just how incredibly lucky you are?

I found this in a article. I thought I’d share. The title is “ a letter to me on the day of the diagnosis “ ❤️❤️ enjoy .”

I have hope for the beauty in our life, I have hope that even when it is hard I can take a step back and appreciate all that Sage has and will accomplish, and I have hope that Sage will continue to grow and thrive in a happy healthy home.

I think it is fitting we end this month on hope. I love the movie A Knights Tale and there is a quote that I’m going to modify just a bit 😊

“(Things) should end with hope. Hope guides me, that is what gets me through the day and especially the night.” I have hope for Sage.

#oursweetsagemarie #sagemariewebb #cloverchristina #pvnh #infantilespasms #ourspeciallittlegirl #aicardisyndrome #infantilespasms #epilepsybaby #seizures #hope

2024

March 1, 2024

Diagnosis:

It’s March, so that means it is the start of our #MarchOnPVNH. This year will be a bit different than our previous years doing it. Instead of posting every day I will only be posting a every week plus a few extra days. Today’s topic is all about Sage’s diagnosis journey.

If you have been following her page or seen many of the posts that I have shared, you will know that I am not shy about sharing our journey into the world of Special Needs which includes PVNH as well as other disorders. I don’t share our story for sympathy or pity, but I try hard to spread the information so that other people who may be going through something similar or are looking for a little light in the world can see our story and gain a bit of hope in their own lives.

Our diagnosis journey really started when Sage was born, if not before that. We didn’t know at the time, but that is really when our lives changed. Sage was born via scheduled C-section and there were no complications during or immediately following her birth. She did have some strange breathing sounds after a few hours but after testing her they amounted to nothing to worry about. We were both doing so well that we were only in the hospital for less than 48 hours.

We thought the change to our lives would just be caring for a new baby and adjusting our lives to having two little girls instead of just one. Sage was always a pretty chill baby, so when she started having strange spasm movements at about 6 weeks old our worry about our new baby started to grow. I tried to convince myself that it was nothing and forgot to mention it to our doctor at her 2-month appointment. When it continued to happen and started getting more exaggerated, we took her in to talk to the doctor. By this point we had researched a bit and thought she as having Infantile Spasms, but the doctor assured us that it was unlikely and could just be startle reflex. A few weeks went by and we decided to go in again and insist on a neurologist referral, and got one. We were able to see the neurologist within just a few days.

We did her first EEG when she was only 3 ½ months old. The test came back normal, but then she had the spasms in front of the neurologist, so he did another review of her EEG. After he didn’t find anything, an overnight VEEG was ordered but that also came back with no seizure activity. I was hoping that news would be a great relief but my mommy-gut was still screaming that something was wrong with my baby.

Then about a week and a half later, the day after she turned 4 months old, we woke up to her having grand mal (tonic-clonic) seizures and focal seizures that lasted almost all day. I called the neurologist and he got back to me immediately and told me to get a video of the seizures. After he was able to review them he told us to go to the ER where they started her on her first seizure medication, Keppra, and diagnosed with Epilepsy.

After a day or two with few to no seizures, they started again and we tried another medication, then another to no avail. Then at 5 months old she had her first MRI, which gave us her PVNH (Periventricular Nodular Heterotopias). “During early brain development, when the baby is still in the womb, normal cells migrate from a location beside the ventricle to the surface of the brain. In PVNH, a small portion of these cells fail to migrate and stay as clumps around the ventricles.” – Epilepsy Foundation.

It was a devastating diagnosis to receive for my little baby who was just starting out in life. The life I had imagined for my two little girls and our family was gone in one fell swoop. A month later she was positively diagnosed with Infantile Spasms, then at 17 months old she was also diagnosed with Aicardi Syndrome as well. She has also been positively diagnosed with Cerebral Palsy and LGS (Lennox-Gastaut Syndrome).

With her original PVNH diagnosis can come many other health issues and diagnoses as time goes on. We will continue to raise awareness and keep speaking out so that these rare disorders will receive the attention they deserve.

#oursweetsagemarie #epilepsybaby #AicardiSyndrome #LGS #PVNH

March 3, 2024

Day-to-Day Life & Symptoms

I am usually pretty good about posting these awareness posts right on time, but thankfully this year the MarchOnPVNH is a bit different, and you get a whole week to post about the topics. I had all intentions of making the post on Sunday March 3^rd, but it’s fitting that our day-to-day life and the symptoms that Sage experiences is what made it hard.

Life with a medically complex child can be very busy and chaotic at times. So, we try to make our daily lives as low-key and relaxed as we can. Sage does the best when she is home in her own environment, so we really try to stay home as much as possible. Our days are filled with therapies, doctor appointments, medications, seizures, setbacks, stress, and very often tears. It can be hard to find balance and create a workable schedule when her seizures are so often and can cause a total shift for the day for all of us. It can be hard, but usually how Sage’s day is doing determines how the day goes for us all.

Sage’s symptoms started when she was only 6 weeks old when she started to have unexplained spasm movements that we later found out were a seizure type called Infantile Spasms. She was officially diagnosed with Epilepsy at 4 months old and it has been a constant fight since then. In her almost 3 years, she has only had just over 2 weeks at a time with no seizures but is has been over a year since we have seen even one day without seizures. And they are sadly a very big part of our days.

Sage just finished weaning one of her first ever medications that she has been on for 2 ½ years (phenobarbital), and I’d be lying if I said it hasn’t been a rough wean. When weaning a seizure medication, it is expected that seizures will get worse for a time. Her increase of seizures hasn’t been as bad as we thought they would be, but it has been a rough few months because of the increase. To put it into perspective, she has averaged 6-10 seizures a day, but now she is averaging closer to10-15 seizures a day. We are hoping that they will level out as the phenobarbital leaves her system.

 I was told once that I am calloused to her seizures, and that is true to a point, but it really never does get easier to see your child go through so much so often. Then every once in a while, a new/uncommon type of seizure for her pops up and really throws me into the panic mode all over again, just like the first time.

We are also working on homeschooling Clover, and finding consistency in her school schedule can be difficult on hard days, but Clover is so understanding and just loves learning when we do find the time to do some lessons. Clover has had to learn to just go with the flow a lot, and she is so understanding when plans change.

Our day-to-day lives look a whole lot different than the typical family. It can be hard to get out of the house often, but we try to go to community events when we can (weekly library story time, zoo, fairs, and farmer’s markets in the summer). We have come a long way through this journey with Sage and we learn more every day. We are still working to adjusting our day-to-day life regularly to accommodate what each of us need and hope to give Sage the best and happiest life we can.

March 10, 2024

Successes & Strengths

It can be hard to see the successes or strengths when you are in the midst of a personal storm with your special needs child. We have had a rough 2024 so far and it is often easier to see all the hardships and setbacks than it is to see the achievements and good times.

I’ve said it many times, Sage is the strongest and most resilient little girl I have ever met. She can have a day full of seizures or some regression and still work to be happy and smile about something, usually at her sister. I wish I was more like her in that way. It has been hard on our whole family to see her struggle the past few months. She just finished weaning a hard medication that she has been on for 2 ½ years, and the withdrawals, extra seizures, and extra muscle weakness she has had to fight all the harder for those happy moments. But we have seen more smiles and giggles in the past week (since we finished the wean) than we have for months.

Sage’s Successes & Strengths look quite a bit different than the typical almost 3-year-old. It is an amazing success if she wakes up and doesn’t have seizures right away. It is a success whenever she sits independently for any amount of time. It is a success when she makes eye contact with us and interacts in the way only she does. One huge success she has had recently was taking her first assisted steps ever in her therapy. I almost missed starting the video when it happened!

I used to compare her to her peers, even though I tried not to, and it was really hard in the beginning when I saw all the kids her age (and younger) “leaving her behind” developmentally. But I have since learned how to see Sage for exactly who she is and celebrate all the small “inch-stones” that she achieves every day. She works so hard for every skill that she develops, and I am so proud of who she is, I wouldn’t have her any other way!

Her strengths have always been her interactions with us and others. She loves people, and especially loves HER people. She loves to cuddle and just be with us; she is just one of us.

If you are lucky enough to have met Sage, you have most likely felt the amazing spirit around her; you can’t help but love her. I know this post is supposed to be about her successes and strengths, but she has helped me to gain so much and become so much more than I ever was before we were blessed with her in our lives. She has strengthened me so much in my hardest days, and knowing that she will forever be my little girl is such sweet realization that I was blessed with such a special, pure little girl. Despite her struggles, she is the strongest person I know.

#oursweetsagemarie #epilepsybaby #AicardiSyndrome #LGS #PVNH

March 17, 2024

Family, Siblings, & Adaptations

I love the topic for today. It is fitting that today is St. Patrick’s Day since I have to two little girl with “green” names: Our lucky Clover and our sweet Sage.

Ever since we were first blessed with Sage, it has been a constant process of adapting and learning what works best for our family. It is always an adjustment period when you have a new baby, but I feel like as soon as we started to get comfortable with having two kids, things started to come to a head, and she started to get her diagnoses: throwing us through a whole new type of adjustment.

When Sage first was diagnosed with Epilepsy at 4 months old we all learned quickly that things were going to be a lot different than we had expected. Clover was only 2 ½ years old and I feel like she had to grow up so fast. She is now 5 years old and is my biggest helper and does so much for me and Sage. There was a time just recently, that Sage went into a big seizure and Clover jumped up and helped me get her settled, grabbed her O2 monitor for me, and opened windows to let in some extra light. She did it all without complaint or hesitation. She is also almost as good of an expert on her seizures as I am. If I am ever not in the room with them and Sage starts to have a seizure, she can tell me it is happening.

Clover accepts her baby sister just as she is and makes efforts to involve her in playing, celebrating all Sage’s strives forward, and is right there with me during the hard times. I am so thankful for who Clover is and I love that she gets to be so involved with everything we do with Sage.

Brandon has always been a grounding presence in our home through the whole journey that we have been on. Sage loves to spend time with her daddy on the weekends when they get to hang out just the two of them, and she gets so excited when he gets home from work, it’s adorable! He has been a great help to me to find joy through our struggles and to see the positive of everything we have been through.

We have made adaptations to our lives to accommodate our new normal, which looks a lot different than a typical family. It might not seem that way on the outside, but we have made a lot of adjustments to our plans and commitments because of the strain it will put on Sage. I am sure as time goes on we will have to make more physical and mental adaptations to our lives, but for now we are just enjoying the journey that we are blessed to take with Sage and our whole family.

#oursweetsagemarie #epilepsybaby #AicardiSyndrome #LGS #PVNH

March 24, 2024

Life & Angels

Life has been a real rollercoaster for us this year, and the past 3 years if I am being honest. We have hit rock bottom and seen some amazing highs. The whole trajectory of our lives changed the day we got Sage’s first diagnosis, and a sharp turn with every subsequent diagnosis. With every uptick of seizures, every medication change, surgery, developmental progression then regression, and with every hopeful step forward our lives taken turn after turn.

This special needs life we are now immersed in has become “normal” to us. It is normal for us to see dozens of seizures in a single day, it is normal for us to have regular doctor and therapy appointments, it is normal for us to make decisions based on what will be best and easiest for Sage, and it has become normal for us to not be normal. Often times I forget how different our lives are until I see others with kids similar ages as my kids, and the stark contrast in how they go about their days.

Our lives look different than most, and there are many days that I feel I am at my breaking point…. But then I remember all the wonderful moments we experience because we have been so blessed with Sage. Ever since she was born, there has been a special spirit about her, and I know she has her own special Angels watching over her. Lately she has been having some harder than normal seizures (she just started getting sick and it was a full moon this past week, both of which cause her to have more and harder seizures) and I have felt the support from her personal angels. In those moments of rough seizures, when her little body is completely exhausted, I have felt the peace that they bring into our home and to my baby girl.

I have had many personal spiritual experiences having to do with Sage, especially in my moments of doubt, and those feelings I can never deny that Sage is watched over by Angels and has a unique special relationship with Heaven.

Sadly, the risk of early death with these disorders is a lot higher than I like to think about (I actively try to avoid thinking about it at all, to be honest). There are many people who have lost their fight with PVNH (and Aicardi Syndrome), and my heart goes out to them. I know their Angel Babies are always watching over them and I can’t imagine how hard it would be to say goodbye to your child.

Life can be so hard, so much different than I ever imagined we would be experiencing, but I am so thankful for how well Sage has been doing. She has been fighting so hard for every improvement she makes, and she is exactly who she needs to be and who we need in our family. She teaches us so much about compassion and grace, and our lives will never be the same because of her.

March 26, 2024

Epilepsy

Today is Purple Day for Epilepsy Awareness! Epilepsy was Sage’s first diagnosis, at only 4 months old. Epilepsy used to be a scary thing to me, and when Sage was diagnosed, I felt our world crashing down around me… little did I know it was only the tip of the iceberg of things we would go through with her. Last November I wrote a blog post for Epilepsy Awareness Month and went into detail about how her seizures are only the outward expression of everything else that is going on with Sage.

https://totheedgeandback-raredisease.blogspot.com/2023/11/epilepsy-awareness-month-november-2023.html

To be diagnosed with Epilepsy, you have to have multiple seizures, and sadly…Sage has had thousands (and that number isn’t exaggerating). Seizures are such a huge part of our daily lives and have been for the best part of the past 3 years. They are a cruel reminder of everything her little body fights every day.

“The majority of people diagnosed with PVNH have seizures at some point in their lives, but most don't start having seizures until teen years or even later. But with her Aicardi Syndrome (which is actually the cause of her PVNH) those seizures always start as an infant and are usually hard to control. 

Sage has been on, and technically failed, 9 seizure medication in her short life. And one surgery to place a Vagus Nerve Stimulator to help control her seizures. We are still adjusting the VNS and it can take a while to find the correct settings for her. 

To fail a med, it means that she has continued to have seizures despite getting the medication to max dose or having to wean medication for other reasons. 

Seizures look different for each person and there are so many different types. Sage has experienced at least 6 different types:

Infantile Spasms- full body tightening for a split second and coming in clusters (she had episodes of these for over an hour at a time- over 10 a minute)

tonic-clonic seizures

tonic seizures

clonic seizures

head drop seizures (Myoclonic Seizures)- associated with Lennox-Gastaut Syndrome

focal seizures- affecting both left and right

Generalized tonic-clonic seizures- usually happen before or after a focal seizure. 

Sometimes it hits me how crazy our lives are, seizures have become a “normal” thing for us to see daily (multiple times a day actually). But I will say, no matter how many times I see Sage have seizures, it never really gets easier. I have learned how to cope during her seizures, learned techniques that help her come out of them a bit quicker… sometimes, learned she usually overheats during them so we have to take her somewhere cool, found certain oils that should help, and just learned how to stay calm and how to best track them. But every once in a while, I break, and just hold her and cry as my baby struggles.”

-        To The Edge and Back: A Families Journey Through Rare Disease (my blog)

Epilepsy used to be a scary word to me, but now I am striving to be the best Epilepsy Advocate I can for my little #epilepsywarrior. We all wore purple today, I made a poster to put in our local library with facts about Epilepsy, and I try to be very open about our experiences with Sage and her struggles with seizures. I try hard to bring awareness to all of Sage’s disorders, but Epilepsy is the most obvious one, the one people can see. She still has upwards of 10 seizure episodes a day and no matter if we are home or running errands, she will most likely have seizures throughout each of our days.

I truly hope that in me sharing our story with all of you, it can spread the awareness, the understanding and compassion, for those who are suffering with Epilepsy and other disorders. As Special needs families we all too often suffer in silence, hoping to not impose our troubles on others, but I am trying to break that impulse and share this journey we are on with as many people as I can.

March 29, 2024

Awareness & Advocacy

Ever since we were thrown into this Special Needs world and knowing I have a medically complex child, my views of Advocacy and Awareness have shifted and evolved. I have always struggled to feel like I am doing enough to bring Awareness to Sage’s disorders, and I still question if I am Advocating well enough for her.

I used to think of Advocacy and Awareness as those who plan fundraisers or “walk for the cure” type of things, but I have come to realize it is more the small, day-to-day things that really make the difference for MY little girl. I have had to learn to be her voice in most, if not all situations.

We found out at our first ER visit that it’s really hard to get an IV in or do a blood draw on Sage, and we’ve had to get pretty regular blood draws to test her medication levels. For the first few months (or longer…) I let nurses and doctors poke and prod her, thinking I couldn’t say anything, but I learned that I am her voice and I started telling them that she was a hard poke and I only wanted them to try if they KNEW they would get a vein the FIRST try. If they were unsure, I would insist they get a NICU nurse that dealt with it daily and could get the blood draw successfully.

It was really hard for me to stand up to medical professionals: nurses, doctors, specialists, etc., and tell them what was best for my daughter. I got a lot of pushback from some and sadly I gave in a lot in the beginning, but not anymore. I am her voice and without me telling them what she needs they won’t know.  I have learned to be firmer about what we want to do with her medications, blood draws, diet, weight (she is really small for her age, and it’s a constant question from lots of doctors), tests that need to be done, and specialist that need to be involved in her care. The more medical professionals that get involved with Sage’s treatment, the firmer I have to be as her advocate.

With Sage’s many diagnoses there are quite a few Awareness days that I try to participate in, because I didn’t know about most of her disorders until she got the diagnosis. I started two different Facebook pages and a blog dedicated to her and our journey with her, but I admit there are still times I feel like I am falling short at bringing the awareness that Sage deserves. I hope that one day those who see Sage will look at her with understanding rather than unspoken questions, I hope that one day there will be greater participation in these awareness days to help bring the research and better treatments, and I hope one day Sage will have all the same opportunities that all children have. I try to celebrate, decorate, and post about these Awareness days to help our extended family and friends understand a bit more about what she goes through and hopefully bring the support and understanding that we work so hard to give her.

This weekend is Easter, and I am struggling with the fact that she won’t be able to participate much, if at all, in our community Easter Egg Hunt because there isn’t an accessible part of the hunt for special needs children. I am tempted to just ask the organizers if I can just take some of the eggs before the hunt so that Sage can “participate”. I know deep down that this all means more to me than it does to Sage, but it just seems so unfair that she is excluded because she “can’t do what other kids her age can do”.

Awareness and Advocacy go hand in hand to create an understanding and compassionate community for Special Needs kids to grow up in. I hope I can be the best Advocate for Sage and stand up for her in every situation, giving her the best life she can have.

March 31, 2024

Hope

We have been participating in #MarchOnPVNH for 3 years now and I have loved how each year we end with Hope. There is a quote from one of my favorite movies, A Knight’s Tale, that I always think of when I think of hope.

“(Things) should end with hope. Hope guides me, that is what gets me through the day and especially the night.”

There have been so many times that all I have left is Hope… hope that things will get better for Sage, hope that a medication will help, but mostly hope that Sage will have a wonderful happy life. Hopes have been dashed many times, but no matter the number of times we are let down, I still find myself hoping at the next turn. All it takes is for one slightly better day, and find myself hoping for things to continue to improve, even if the next day is worse. Hope is a living thing, and ebbs and flows and I don’t think I could do this without it.

I think it is also fitting that today is Easter Sunday. Easter is all about HOPE. I have a good friend that sent me an amazing gift of a Cross from Israel. I am a Christan, but I’ve never owned a cross before and the fact that it came from the very place that it represents means so much more to me. I know that Jesus Christ died for me and lives again, that He is the only One who truly understands what our lives are like. I know Sage has such a special relationship with Heaven, and as hard as it can be for me, I know she was sent to us exactly as she is on purpose. She was sent to us to make a difference in this world, to show us a little piece of what Heaven looks like.

I have hope for the beauty in our life, I have hope that even when it is hard I can take a step back and appreciate all that Sage has and will accomplish, and I have hope that Sage will continue to grow and thrive in a happy healthy home. I have hope that her beautiful spirit will always shine bright in our lives, and she will continue to teach us all the lessons we are meant to learn from her. Sage brings me hope, and she is one of a kind.