Penny’s Crazy Train

Happy Father's Day to all the dads out there, AND all the special needs Dad's!

I feel blessed to be the father of all these beautiful girls, and that I still get to be this special little one's Dad almost 5 years later. Penny has been very alert and happy to be getting out of the house and it finally seems like we've struck a balance with her seizures. She has gotten to go swimming in the pool, tasting Friendly's Ice Cream, and been all smiles as we pushed her around to all the different expo showcases. ❤️

For Father's Day, we spent the weekend at a wonderful expo in Orlando called The Family Cafe, which is geared towards helping families with special needs children find resources to help care for their special little one. It's generally overseen by Governor Desantis, but he was unfortunately unable to attend due to the excessive flooding we had from this crazy rain. Prayers for all the folks affected by that!!

While the event is more geared towards kiddos with birth injury or developmental disorders rather than acquired injury, it was still highly informative and worth the visit just to be around so many other families in similar circumstances. We are not alone in this, and that is definitely clear. There was a lot of love in one room.

Love to all of you. I feel like the luckiest Dad alive. ❤️


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Make a donation via GoFundMe for Penny's continued recovery!
gofundme.com/1wgloc0cw0
*We have also added a "$1 a month" tier to our Patreon Page for Penelope's "Crazy Train Followers". If every follower on this FB page committed to just $1 a month, Penny's care would be so much more manageable!*
Subscribe monthly on PATREON
https://patreon.com/pennyscrazytrain
Subscribe monthly on PATREON
patreon.com/pennyscrazytrain

With every step forward, there's always going be a misstep here and there.

For several months now, we have been attempting to address a problem with Penny's g-tube.

For nearly 4 years, it was the cleanest, healthiest tube that specialists constantly bragged about given how healthy it was, that we meticulously cared for to avoid what we are dealing with at this moment. You take pride in these things as a special needs parent because you love your kiddo and you want he/she to be healthy.

For 2 weeks now, Penny's g-tube seems to keep falling out without explanation, deflating for no reason. It's been progressively getting worse with some type of a fungal irritation. I apologize that it looks a bit gross, but this is very new to us. It started as a red ring of irritation and has slowly progressed to this.

We have been working with GI for several months, tried various creams, antibiotics, etc to address it to no avail. It doesn't seem to respond to anything.

We have a meeting with a new opinion coming up to see what we can do, and much like what we have to do with her trach infections, this will have to be scraped, cultured and tested to figure out what it is and what it's susceptible to.

She's otherwise been in good spirits, but it has been an incredibly stressful and painful for her, resulting in some pretty lousy seizure activity. 💔

Although it sucks, it could always be worse, as there are several of our drowning community friends dealing with hospital readmittence right now with their child. Please keep them, and Penny, in your prayers.

These are strong-willed kiddos who have been through a lot!


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Make a donation via GoFundMe for Penny's continued recovery!
gofundme.com/1wgloc0cw0
*We have also added a "$1 a month" tier to our Patreon Page for Penelope's "Crazy Train Followers". If every follower on this FB page committed to just $1 a month, Penny's care would be so much more manageable!*
Subscribe monthly on PATREON
https://patreon.com/pennyscrazytrain
Subscribe monthly on PATREON
patreon.com/pennyscrazytrain

It's with a heavy heart that we announce the passing of one of our closest family friends and biggest Penny supporters, Tamie Gibbons.

It's hard to put into words how special of a lady she was, but so many memories come to mind, whether it was her helping us decorate for our wedding, making homemade costumes and clothing for all our kids at every stage of their lives, and bragging about our family like we were her own kids. ❤️

We love you, Tamie. Thank you for your big heart and the lifelong memories we have to remember you by.

You really were a great mom and grandma! ❤️

It's hard to believe that the second group of shots was where we started several years ago and the first shot is where we are now. Pretty happy for a kiddo that just passed a very painful kidney stone!!!!! 💔

When you take a look at those shots closely,, the progress is undeniable. Is it slow? Yes, but it's the steps forward that let us know we are on the right path, and all the therapy we have done has led us to where we are and where we want to go from here.

She is going out with the family again, going to church, out to dinner, to her sister's soccer games, their dance recitals, and even Dad's concerts.

To say it's all puppy dogs and rainbows on a daily basis would be silly. Setbacks galore. Penny has had PLENTY the last few weeks, stemming from a trach infection, g-tube issues, and even a kidney stone, which left her writhing in pain for days. 💔 Heart rate was almost 200, and it was very scary.

After a visit to the doctor, X-rays, and various blood tests, we determined the problem, and once she passed it... Well, her face speaks for itself. The good news, she is back to good spirits, and the sassy behavior has returned.

She is even repositioning herself when we put her places, refusing to sit the way we position her, instead moving herself into whatever positions she so desires (as demonstrated by the third photo). 😆

In addition, if you review the last shot, thanks to Hope Hospice, Penny is now partaking in group art therapy with all of her sisters, allowing her to draw, paint, and work on projects with the whole family. ❤️ It's been so good for her, and also for her sisters. They needed an outlet they could all enjoy together.

What some might interpret as trivial, we view as an accomplishment, because it's something she has never done before. In this (for lack of a better term) depressing world of brain injury, you learn to appreciate the little things more and more, because in all honesty, those little things are huge.

The biggest struggle is finding specialists that can view baby steps as milestones without losing confidence in what they are doing. So much of today is about instant gratification, and when you don't see progress immediately, you tend to give up. Penny's condition has gotten leaps and bounds better than where we started, and every physician and therapist that has stuck with us since the beginning can visually and mentally see the improvement.

When it comes to this condition, patience is key, and we don't decide the speed in which she improves. Our job is to give her the tools necessary to get better and find those who believe in her and what she is meant to do. Everything happens for a reason, and Penny has touched so many with her story over the years, especially Mom & Dad. Penny's Crazy Train is a team. We have ALL gotten to this point together.

Any time we feel like giving up on something, we just look at her and see how in 4+ years since her injury, she has never stopped fighting, so... Why should we???

We look forward to what else this little girl has in store for us as we approach her 6th birthday in August, and you can bet that Mom and Dad will be there to help.

Thank you for continuing the fight with us all these years later. We have a lot of plans for this Peanut and your prayers and support have kept this train moving full steam ahead.

In addition, now that Mom has graduated and things are moving forward, we are looking into more stem cell treatment over the summer, which we attribute to much of the progress we have seen in recent years, so we are looking for some folks that might be interested in helping sponsor some of her treatment this summer, so if you would like to be a part of that, please PM us!

We love you all!


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Make a donation via GoFundMe for Penny's continued recovery!
gofundme.com/1wgloc0cw0
*We have also added a "$1 a month" tier to our Patreon Page for Penelope's "Crazy Train Followers". If every follower on this FB page committed to just $1 a month, Penny's care would be so much more manageable!*
Subscribe monthly on PATREON
https://patreon.com/pennyscrazytrain
Subscribe monthly on PATREON
patreon.com/pennyscrazytrain

Happy Mother's Day to all mommas!!!

We are honoring a special and irreplaceable family member today that has shown time and time again just how amazing a mother she truly is.

Even today, she is the nurse for little Penny, so Breakfast in Bed was definitely different this year!

Words cannot describe how I feel about this special lady and all she has done for this family.

She is truly one of a kind.

Happy Mother's Day to Kat Lagergren, the best mom there is! ❤️❤️❤️ We love you!!!!


---------------------------
Make a donation via GoFundMe for Penny's continued recovery!
gofundme.com/1wgloc0cw0
*We have also added a "$1 a month" tier to our Patreon Page for Penelope's "Crazy Train Followers". If every follower on this FB page committed to just $1 a month, Penny's care would be so much more manageable!*
Subscribe monthly on PATREON
https://patreon.com/pennyscrazytrain
Subscribe monthly on PATREON
patreon.com/pennyscrazytrain

It’s been an emotional month for our family, but this sweet girl has found ways to keep us all laughing and smiling. From goofy poses that show off her increased flexibility to temper tantrums at the cat cafe, her personality has been shining through.

The first photo truly display how far she has come with her tone and spasticity. We remember very clearly when she first came home from the hospital and could not bend any of her joints and could not even sit in a car seat because she was too stiff. Now she not only lets us play with her in silly positions, she keeps herself in those poses for a few minutes instead of her body just falling in on itself. Her PT has been very pleased with her increased strength. As little as it may seem to some, PT is able to provide less support to her back and head while she sits up which helps to provide a better quality of life for this peanut.

Maria wanted to go to a cat cafe for her birthday and we were fortunate to be able to bring Penny with us. However, as she watched everyone play with the dozen or so cats in the room she began to get irritated. Having multiple cats come to her stroller and sniff her and rub against her home set her off. In the second photo you can see her throwing her head back and shifting her body. Her heart rate hit the 150s as she stiffened up and turned red. The moment we picked her up and let her sit on the floor with us when she could touch cats, she relaxed and her heart rate dropped back to the 90s. It’s funny how much this girl loves her animals. But then again, look at the last photos of her sleeping with her favorite kitties at some.l, so really it should be no surprise.

This month is water safety awareness month. Every day we are so thankful for this extra time we are blessed to share with our dear Peanut. Many days can be challenging when you have a special needs child, but we love this girl with our entire being for everything she is. Amazing. Strong. Brave. Silly. Sassy.


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Make a donation via GoFundMe for Penny's continued recovery!
gofundme.com/1wgloc0cw0
*We have also added a "$1 a month" tier to our Patreon Page for Penelope's "Crazy Train Followers". If every follower on this FB page committed to just $1 a month, Penny's care would be so much more manageable!*
Subscribe monthly on PATREON
https://patreon.com/pennyscrazytrain
Subscribe monthly on PATREON
patreon.com/pennyscrazytrain

Sometimes you just need some sister cuddles to make you feel better.

Penny is doing so much better and got the most relaxed we have seen her in weeks last night while cuddling with her big sister and watching some TV. Nice to see both girls on the mend. Their bond is something indescribable ❤️

It’s been a busy few weeks for our family.
Unfortunately, when you have a trach, it is common to get infections (referred to as tracheitis) that colonize in your body and never fully go away. When the body is stressed they will flare up to cause more issues. When peny was first in the hospitals in 2020 she got MRSa and pseudomonas. We have done a decent job keeping them at bay and the doctor said she had not been on antibiotics since 2021. Penny did get an infection which lead to pneumonia and triggered those infections to flare up. We were fortunate to not have to bring her to the hospital and have a very responsive medical team who helped us find the safest way to treat her at home. The doctors don’t want immunocompromised kids like Penny in the hospital any more than we do; it puts them at too much risk for picking up more infections.

One of Penny’s nurses accidentally tugged her gtube out a few weeks ago (for those who don’t know, this is something that does happen to kids with gtubes) and when we put a new one in it got very irritated. That has been causing Pennybsome obvious discomfort so we have also been working with GI to treat the irritation.

In addition, thanks to the antibiotics and pain meds, Penny got badly constipated, causing even more pain and discomfort. GI and the pediatrician also worked with us to help her get through that.

We are finally in a place where Penny is much more comfortable and relaxed. And then Lizzy got sick. 102 fever, vomiting all weekend. Today Penny had a low grade fever despite our best efforts to keep the girls away from each other.

Surprise surprise through it all, there were lots of kitty snuggles! These kitties just know what she is feeling and embrace her (literally) to help her feel better. Pet therapy is such a great thing. Penny always smiles, heart rate relaxes, and she sleeps better when her feline friends are near her side.

In the midst of all of this, we had Abigail’s 15th birthday on Easter Sunday, Maria’s 14th birthday was yesterday as Lizzys 8th birthday is next weekend. Please join us in wishing these superstar girls very happy birthdays! There is nothing easy about being the sibling of a child with severe disabilities, but they do it with pride and grace and they each have a special relationship with Penny that shines through.


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Make a donation via GoFundMe for Penny's continued recovery!
gofundme.com/1wgloc0cw0
*We have also added a "$1 a month" tier to our Patreon Page for Penelope's "Crazy Train Followers". If every follower on this FB page committed to just $1 a month, Penny's care would be so much more manageable!*
Subscribe monthly on PATREON
https://patreon.com/pennyscrazytrain
Subscribe monthly on PATREON
patreon.com/pennyscrazytrain

We hope you all had a wonderful Easter celebration!

Easter was a little different for us this year as it also fell on our oldest daughter’s 15th birthday. We were fortunate to just spend the long weekend enjoying time with each other.

On Saturday we took Abigail to an amazing Portuguese restaurant in St. Petersburg. The entire family was able to come and we even let Penny try bits of our food (though we don’t think she was a fan 🤣). She was however, relaxed and happy to be in the company of the family.

On Easter Sunday we had an egg hunt at home, followed by Mass. Per tradition, Penny hated her Easter dress and wanted it taken off the second we got home from church 🤣 We then spent the rest of the day just relaxing together, watching tv, playing video games, etc.. I think we all enjoyed having a down day with nowhere to be.

Monday Abigail requested to go ice skating with a few friends. PJ was at work, but Kat sat with Penny while the other three girls went skating. Penny loves visiting the rink, partly because she loves the cold. During this time Abigail fell on the ice and someone skated over one of her fingers. We are thankful that the finger only has a small laceration and didn’t need stitches, but it did result in a trip to the ER.

While sitting in the ER we overheard the nurses speaking of the large amount of child drownings they have had lately, including two on Easter Sunday. This is where I am sad to say that we are in “ drowning season” and we feel strongly about needing to speak out about water safety. Drownings do not only happen to negligent parents. It can happen to those who think they have taken every precaution, and yet still the stars align in just the right way to create something catastrophic. It’s easy for people today someone just needs to keep an eye on the children at all times, but It only takes a moment, to turn your attention to another sibling before everything else can go wrong. So yes, keeping a eye on kids near water is important, even if you think they can’t get out to the water, but there are other preventative measures because the fact of the matter is that things do happen.

ISR swimming lessons are so crucial to helping a child know how to self rescue. In order to pass the class, they have to take a rather they are fully clothed (sneakers, jackets, everything) because most drownings don’t happen when kids are in their bathing suits ready for a swim, and the feeling of being fully dressed in water is very different. ISR can be expensive, but there are organizations out there that can help provide scholarships such as Live Like Jake. No child should drown just because their parents can’t afford swimming lessons!

You can also put alarms on doors and windows (there are inexpensive but effective ones on Amazon for around $7). If you have a pool, you should have a pool gate around it. But be warned. I was at a pool party recently where the moms did not know Penny’s story. They were talking about drownings and swimming lessons and then get on the topic of safety and if alarms and gates are required. They said that while they are, some of the companies who install them will tell you how to disable it all and not worry about it once you have passed inspection. I was completely disgusted! How is having an alarm or a gate going to inconvenience your life that much? Is ignoring the inconvenience worth your child’s life? I wish I knew which companies did this because they need to be held accountable if they are truly encouraging this. Water safety is no joke.

We have mentioned before how dangerous the arm floaties are and how it puts kids in drowning position, but let me explain why. Once again, most drownings don’t happen when kids are prepared to be in the water. The floaties make them stay upright instead of a natural floating position (similar to how you are positioned while swimming or floating on your back). This makes kids think that is the way they should be in the water, so if they fall in the water without those floaties they put themselves upright like that, which unfortunately puts you in a position to drown rather than to self rescue. This does not mean they should never have life saving preventative things like life jackets while out on a boat and what not, but you should absolutely not supplement swimming lessons with these floaties or else they can’t help themselves in these crucial moments.

Please please share this information with your loved ones and if you have any questions about water safety, don’t be afraid to reach out to us or any organization that provides resources and information!


---------------------------
Make a donation via GoFundMe for Penny's continued recovery!
gofundme.com/1wgloc0cw0
*We have also added a "$1 a month" tier to our Patreon Page for Penelope's "Crazy Train Followers". If every follower on this FB page committed to just $1 a month, Penny's care would be so much more manageable!*
Subscribe monthly on PATREON
https://patreon.com/pennyscrazytrain
Subscribe monthly on PATREON
patreon.com/pennyscrazytrain

As we approach the most joyous celebration of our Lord's resurrection, it really brings into perspective what it really means to be blessed. We are blessed to have these opportunities to still be a complete family. We remember very distinctly celebrating 4 birthdays and an Easter from the Golisano PICU. This is definitely a step in the right direction, but making sure we stay on the right path is key.

Penelope has been working very hard at PT utilizing all of her brand new equipment, and her stamina and control is showing as a result

We are so proud of her for all that she has accomplished as we celebrate our 4th Easter post injury with her.

Our kids have learned how to care for her as well, with Little Lizzy never shying awake from suctioning her and, moving her around like it's no big deal. That's her little sister in there and she comes first to her. During an appointment the other day, Lizzy offered Penny half her brain if it would help Penny heal faster. ❤️ That's just the type of person she is. Christ encouraged us to love each other unconditionally, and if that isn't real love, I don't know what is.

We have been fortunate to have an army of Angels along the way that have given us this gift we celebrate today.

God bless you from the Penny’s Crazy Train family, and Happy Easter to you and yours!


---------------------------
Make a donation via GoFundMe for Penny's continued recovery!
gofundme.com/1wgloc0cw0
*We have also added a "$1 a month" tier to our Patreon Page for Penelope's "Crazy Train Followers". If every follower on this FB page committed to just $1 a month, Penny's care would be so much more manageable!*
Subscribe monthly on PATREON
https://patreon.com/pennyscrazytrain
Subscribe monthly on PATREON
patreon.com/pennyscrazytrain

Hey Crazy Train!
Last week we celebrated Kats birthday. Then life got busy again as PJ has been working a lot, Penny was fighting a good, and Kat injured her foot while cleaning the garage. This means that when Kat was the weekend nurse with her foot in a boot, Penny had to spend a lot of time laying on Kats lap and snuggling. I don’t think she’s too upset about it. 😉

When Lizzy saw these photos she asked “who is that?” and when we told her she followed with “why does she look like that?”

Our iPhone memories brought up 4 photos of Penny from 2021. This was one year post injury and she was a completely unrecognizable baby! She had barely survived the rhino virus 2 months earlier and was bloated from the doctors poor dietary monitoring. These photos (followed by 4 recent ones) remind us why we home blend her foods and don’t just shove formula into her gtube.

Penny is thriving off her home blends and doctors have never been happier with her physical appearance and lab results.

Over the last week Penny has been fighting a cold, but she is so much stronger than she used to be! We let her rest this week, and she hasn’t needed antibiotics or a vent. It’s such a feeling of relief, though it doesn’t stop us from worrying.

March is brain injury awareness month. We will take this month to really explore the changes, good and bad, Penny has faced over the course of this journey and share what we have learned to help others who face this journey.

This is a reminder that you are not alone, even though it can feel that way most days.

These pictures truly remind us how far we have come and how much has changed over these 4 years. Thank you to all of you who have helped guide us through these 4 years as you showered us with your prayers and support. Penny only thrives now because of what all of you have done to make this care possible.

Thank you from the bottom of our hearts!
We are so excited to see what the next 4 years will bring our sweet girl!



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Make a donation via GoFundMe for Penny's continued recovery!
gofundme.com/1wgloc0cw0
*We have also added a "$1 a month" tier to our Patreon Page for Penelope's "Crazy Train Followers". If every follower on this FB page committed to just $1 a month, Penny's care would be so much more manageable!*
Subscribe monthly on PATREON
https://patreon.com/pennyscrazytrain
Subscribe monthly on PATREON
patreon.com/pennyscrazytrain