July 25, 2024
I always go back to that day. 12 hours after the boys were born, I’m upstairs in my room, listening to the IV beep continuously because my nurse is no where to be found. The room phone rings, it’s the NICU, they say “We need you to come downstairs, there has been an INCIDENT”. INCIDENT, that’s the word that was used. I can remember everything as if it were happening right now. Jeffrey was frantically trying to find our nurse, a nurse, any nurse to get that damn IV out of me. Finally a nurse came to the room and was getting me in a wheelchair and unhooked. Rushing us to the staff elevators. I was scared. He was scared. Just get me to the NICU, now…that is all I could think at that moment.
As the nurse is taking us to the staff elevators, we see my nurse in the hallway. She asks where I am going and we tell her we have been called to the NICU. She says she will take me, and then proceeds to slowly roll me to the staff elevators. A PCA joins in on the walk and when we get to the elevators she and the nurse argue about bringing another wheelchair or not, leaving Jeffrey and me just staring at each other before Jeffrey finally saying, “Are you serious right now”.
I feel the pit in my stomach, the lump in my throat the inability to breathe as the elevator starts to move. The doors open, and there is a SEA of people. The hallways are full. I mean, FULL. As I am being wheeled down the hallway the people part like Red Sea in the movie the Ten Commandments. People I have never even seen are whispering “that’s mom” as we pass them. I’m thinking that one or both of my children are gone…
The room was dark, across the room I see a bright light, the incubator is raised and open and the light is on. The room is full of people, but the one that stands out to me is the one standing at the end of the incubator with one arm across his stomach and the other arm holding his chin…the NICU doctor. As soon as my wheelchair crossed the threshold of that NICU room, he turned around and started coming towards me. I stood up and started walking to the incubator. Everyone afraid that I am going to fall and asking me to please sit down, just 12 hours ago I had had a c-section and was on pain meds. I snapped back that I was fine. Jeffrey rushed to my side and we got to the side of the incubator together.
“What happened” I ask as I look at my tiny little 1lb 8oz Dale. He has a purple line down the middle of his body, his chest and sternum are sunken in. I’m still not 100% sure what is happening, but I am looking at the monitors for a heart beat and a respiratory rate.
“We had an incident” the doctor says.
“An incident? What does that mean?” We say
“We tried to extubate him and we lost his airway. It took us 18 minutes to get him back, but he is reintubated now and stable.” Says the doctor
“What is the purple mark?” I asked
“A bruise from doing compressions.” Says the doctor
“Is he going to be ok?” Jeffrey asked
“Right now he is stable. We will just have to wait and see.” Says the doctor
“Is he going to have brain damage or have anything wrong with him?” I ask.
“He may, and he may not. We will just have to wait and see. He may have nothing wrong and he might. We may not know right away, it may be years before we see anything. All we can do is wait and see.” Says the doctor
Wait and see…MAY BE YEARS. Years being the keyword in this conversation…and here we are; 5 years later and things are starting to surface. Things that no one understands, not even us. Things that we can’t control no matter what we have tried so far. Things that are HARD. So hard.
Dale has always been behind developmentally. That was a given, being born at 26 weeks. But, what we didn’t know was how the 18 minutes of oxygen deprivation would affect his brain. He has had an MRI and he does have hypoxic areas (areas damaged from the oxygen deprivation), things that can’t be “fixed”.
We’ve been on a waiting list for a psychological evaluation for over a year and a half and have finally gotten that appointment for October. So, we’ve been seeing things for a while. Self harm from the time he could walk, having to have everything just right…you have to tell him what is going to happen during the day and if you are going to vary from that timeline you need to make him aware or it really disturbs him.
For example: We are going to go to Wal-Mart and you can go in, but when we stop at Publix mama is going to run in by herself and you will stay in the van with Daddy and Bubba.
You can’t change that to: We are going to stop and get something to eat in the drive-thru, go to Sam’s and let Daddy go in to get medicines while you sit in the car with Mama and Bubba, go to Wal-Mart and you can go in, and stop at Publix and you can go in.
If the plan changes you have to tell him, in detail, how it is going to go, or there is a major breakdown.
His communication is a challenge. The more his vocabulary grows the harder it is to understand him. We have a communication device but it is still challenging. This causes self harm and major breakdowns.
Despite a routine, medications, tons of activity; insomnia is a daily issue. I don’t care if we stay busy from the time his eyes open until we wrangle him to sleep, he doesn’t sleep long, he doesn’t sleep soundly. He talks in his sleep, he falls out of bed even though he has a full size bed and is in the middle of it.
Recently the self harm and harm to others has become a big issue. Discipline, taking things away, putting him in his room, talks…none of it works. The other day our doctor got to witness the self harm and harm to others. I broke down in tears, asked her why I am such a bad mom, what am I doing wrong. She told me that it is not my fault or his fault, it is the damage to his brain and we just have to find the route of treatment that works for him. Phone calls, referrals and texts have been sent.
Right now we just have to weather the storm. It’s hard, it is exhausting. Everyone just tells me to bust his butt. Discipline is not the issue, he is disciplined, and he is a GOOD kid. But, out of no where, it is like a button gets pushed, the hurricane lasts for 12-80 hours at a time. Then just like that, the button gets pushed again and it is over. We haven’t been able to figure out the triggers. Every time it is a different scenario, different time of day.
The first doctor we have seen has diagnosed, ODD, ADHD, Unspecified Mood Disorder (I don’t even understand that one), and OCD. I agree with all of that but the mood disorder. Autism is still not off the table, but leaning towards no. He has empathy and most people with autism, I have been told, do not.
People have pulled away because of Zack’s disabilities and the handful of people that are still around are now pulling away because of Dale’s disabilities. One thing they will never have to worry about, is ME. I will never turn my back on them. I will never let them fight alone. I may need a break, I may cry, I may have some bad days, but I will always stand beside my boys. Despite all the hard things, they’re a blessing. They are my miracles and I cherish them. Every bit of them.
April 28, 2024
4/28/24
I tell you what, it is NEVER a dull moment around here. Ever. at 2:30am on the 24th we had to call First Responders for Zack. He woke me up with a croupy cough and then his breathing sounded funny. I hooked him up to his pulse ox, is sats were 97-100 his heart rate was 147-152, he looked like he was retracting, I gave him a breathing treatment...he still appeared to be gasping for air. He wasn't cyanotic. I called Jeffrey at work and told him I was calling 911. He came straight to the house. I went back and forth with what to do...call, don't call, is this a side effect of the VNS, why are his sats fine but his visuals are off? This is the world I live in 24/7.
Jeffrey agreed, we didn't feel the need to go to the ER, we didn't feel the need for 911, but we did feel the need for reassurance. So, I called the non-emergent number to the closest Fire Station, gave them all the information, they were already preparing to come this way when he gave me the number to the non-emergent dispatch number and told me to call them so they could officially be dispatched.
They arrived, listened, checked his sats and they agreed with us. They were also thinking that because of his inability to clear drainage that he may be having drainage, and the VNS could be making it harder for him to get those "situated".
We went to Pulmonary and they couldn't find anything "wrong". Thought he might be coming down with something. So, we started breathing treatments, ordered a suction machine, more pulse ox probes for his SAT machine. We also started a round of steroids.
As of right now, he just sounds VERY congested, like he cannot clear secretions. Dale is also all stuffed up. The pollen has been brutal. But, we're taking allergy meds, monitoring closely and we just keep putting 1 foot in front of the other.
We're supposed to go on a camping trip this weekend with the Alabama chapter of Hands and Voices. It is for deaf/hard of hearing. We've been trying to go for 3 years, maybe the 3rd time will be the charm. First year COVID took us out, last year it was increased seizure activity and this year...we're on the track to GO. I start packing today.
April 10, 2024
4/10/24
YESTERDAY DALE & ZACK TURNED 5! FIVE! A WHOLE HAND! How are we a WHOLE HAND? Their party had to be postponed due to Zack's surgery, but we did go to the Petting Zoo, out to dinner and had cake and presents from with Grandma and Grandpa. It was a good day.
Zack had surgery to get the VNS (Vagus Nerve Stimulator) on 4/2/24. He has done a lot better with recovery than I anticipated he would. We came home 2 days earlier than we had planned. The incisions are A LOT bigger than we were told they would be. More scars on my baby. This child has more scars than any one I have ever seen. Each one tells a story. Each one I can tell you what happened and why. It's something that weighs heavy on my heart often.
Dale was great during the whole process. He did not like going to the recovery room and seeing Zack hooked up to monitors, oxygen and unarousable. That was hard, he fought back tears and got super quiet. One thing is for sure. He LOVES his Bubba and I hope that NEVER changes.
Both the boys have been fitted for AFOs. Zack has already grown out of his newest pair, and this will be Dale's first pair. Zack is getting sharks and Dale picked SpiderMan.
I've had an emergency appendectomy since my last update. That was fun. And then just a week ago I was BACK in the hospital with severe neck pain and stiffness, migraines and vomiting. The neck issues started when we got to Pensacola for Zack's surgery. That was fun, dealing with that for the entire time we were there. On the way home, I started to not be able to swallow, and would have uncontrolled movements from time to time. ER diagnosed me with stress induced neck spasms that are causing tension headaches that are turning into migraines. His solution, drug me, put me in a dark room, give me an IV and let me sleep for about 2 hours. IT WORKED. At discharge, tells me...reduce your stress. YEAH OK. SURE. NOT A PROBLEM DOC.
Once I got home. I realized I left my pillow in the ER. (I took my own because I knew I would be waiting forever, and I couldn't hold my head up.) So, sleeping stunk that night. I had to go buy a new one...but it's not MY pillow yet.
The elephant in the room...the TREXO. I still want to give this to my child so badly. But in 3 years we've only raised a little over $3k and with that $3k we just ordered several special needs pool floats. We got them a pool for their birthday to at least be able to give them the aquatic therapy at home. But, handicap floats are not cheap. I think we spend right at $600 out of this campaign for those items and it has not been reflected yet. That will take our total raised back down to about $2700.
I've honestly just been trying to get the Trexo out of my head. It is a dream, not a reality, and while I still believe that dreams come true, I know that not ALL of them do and this is one that is not going to. The prices of the Trexo has gone up significantly this year. It would cost about $65k for us to get one in home now. After 3 years of being on the wait list, barely having a penny in the bucket for it, I just can't keep running myself ragged trying to fundraise for something that is never going to happen. Reduce my stress right. What about my sadness and depression?
For now, we're gearing up for our first post-op appointment, the VNS to be turned on (they wanted him to heal before we actually turned it on.), and a family retreat for a weekend for the deaf and hard of hearing. We've been trying to get to this retreat for about 2 years now...Let's hope that the 3rd time is the charm.
I still have to load pictures one by one, so I will try to get some loaded tonight. We have BAD weather coming our way. I have to cook dinner and I'm trying to just reduce my stress by prioritizing things. Or not dwelling on things I don't get done.
We've been focusing on getting the back yard set up for their privacy and safety and their abilities. Zack can't do anything, even at the accessible park here. The park has 2 swings that he can use but we usually have to wait for the neuro typical parents and children to get done playing with them before he can. He can get on the area where the slides are, but he can't use anything. He can WATCH everyone else play. And the sway boat is always full of parents eating/drinking and chilling while their kids play. So, since we have a swing set, I bought the swing on our Amazon list with the payment plan so he can swing here all the time. Somone purchased a disc swing off their list because they both love that and they can swing together. We bought an above ground pool so we can get both of them in the water as much as possible this summer.
Here is their birthday list. As always, thank you all and God Bless you all. Anyone getting this weather, STAY SAFE.
www.amazon.com
March 18, 2024
3/18/24
I know it has been awhile. I’m sorry. But, things get so piled up and then day to day life is just tough. I’m also still dealing with the fact that the reason I started fundraising was for Zack to walk, and I just don’t think we’re ever going to meet that goal.
With that being said, we have turned in a fund request to HHL for swimming equipment for Dale and Zack. With Zack getting ready to have surgery we decided that this would be the year to get them an above ground pool for their birthday. They don’t need toys, they don’t need clothes, and the doctors are always telling me how beneficial water therapy would be for them, especially Zack. So we got them a pool.
We met with Zack’s neurosurgeon and we both liked him. He was wonderful and we left that day with a surgery date of April 2. I’m a nervous wreck. He’s not supposed to get sick, not allowed to take aspirin or ibuprofen from now until surgery day. He does have an ear infection…I’ve called and let the doctor know that. Assuming that since I have not heard from them that we are still good to go. I really do not want to postpone this surgery.
I had emergency surgery almost 2 weeks ago. I has an appendectomy. So that has been fun to add to our plate.
Dale was granted a WISH trip through Magic Moments here in our state. I’m planning that for February 2025. Their Dad doesn’t have any more sick/vacation time to take since he had to take off for my surgery and then has used it all for appointments for Zack. So, it can.t be done this year.
It honestly saddens me that it’s mid-March and Jeffrey has no more time off. What happens if something happens later in the year? What happens if he gets ill/hurt?
Dale has become very independent and helpful lately. He is doing great. I’m so proud of him.
¸Zack has not had a seizure in 3 weeks, he has been more engaged and alert and it has been wonderful.
I guess that’s about it for now. I have to go make breakfast for my two greatest blessings!
Hope you all have a wonderful day!
February 2, 2024
2/1/24
Happy February! I've spent the day updating our February calendar and to say that I am overwhelmed would definitely be an understatement. Currently we are at...40 appointments and we still have to schedule some.
Update on Dale: He has been diagnosed with Insomnia and most likely ADHD. We're going DAYS without sleep or very little sleep. We're trying some prescribed medications to try and get some sleep. It's taking it's tole on me and him. All of us really.
Update on Zack: He is having a new kind of seizure. He had a 7-minute seizure yesterday at Speech Therapy. We confirmed with several doctors that it was the king of seizure that I thought it was. That now makes 4 identified types of seizures that we know about.
I have not done any fundraising yet this year. It's just so disheartening at this point. With the money we have raised we were able to get Zack some safety sheets for his bed. It is something we desperately needed and it wasn't as easy of a process as I hoped it would be but good people made it happen.
I have applied for some grants and am in the second phase of one of those. But, that is also just very time consuming.
So far for the month of February we have 40 appointments scheduled, and I know I have 2 more people to still schedule with for sure. So...there's that.
We did go to a Mardi Gras Parade and ran in to one of the nurses that took care of Zack in the NICU. It was nice to see a face that helped keep my baby alive and be reminded of that. Sometimes God works in mysterious ways!
I'm thinking of starting a fundraiser for a shed for school...I plan on homeschooling and would like to have a separate place to take them to do those activites. Where that is the ONLY thing that we do in there. I do not have anywhere in my house that can provide even a small area for us.
I don't know. There's just always so much to think about and do. My brain never stops.
Y'all have a great day and thank you for following us! God Bless you all.
January 9, 2024
1/8/24
Happy New Year! We're 8 days in and have done 4 spontaneous things with twin friends, have had to start medications for ANOTHER ear infection (Zack) and an eye infection (Dale).
We have taken our fundraising jar down from a local restaurant. After a year and half, we've raised $25-$30 from this jar. It was time to let it go. Sad, hard more so for me than anyone else. But it was time.
There is not a day that goes by that I don't think about why I started this journey with HHL or why I wish we could hit that goal and get that Trexo for Zack. Facts are constantly running through my head and I am always seeing things "pop up" to remind me. Like all the benefits, or how the brain has the most elasticity from birth to three years of age; which we have obviously surpassed. Or that from birth to five years of age is when it is our best opportunity to lay the foundation to build the new pathways and reroute his brain. Here we are 4 months away from turning five.
All these opportunities passing us by. All the loss of the opportunities that I desperately wanted to give him. Sometimes it is TOO much for me to bear. But, I choke back the tears and I put on a happy face and keep putting one foot in front of the other. Because I have to. I have to for him, I have to for Dale. I have to for me.
The outings we are managing to go to, are still hard for me as well. The thoughts that creep in and take over are hard to rally with. If we go to the park and I "include" him by wheeling him around in his wheelchair to WATCH all the other children play at the so called "accessible" playground; what is HE thinking. Is he wondering WHY no one is playing with him. Or why is he sitting there and not playing too? Why can't he swing or slide or run or jump. I wonder if he knows he is different. I wonder if he knows that this life is unfair. I wonder what he knows and how he feels, but he can't tell me. He can't show me. He just has to be happy to be there, right? Happy to not be left behind completely. Happy that his brother waves and yells as he runs by laughing and playing. Happy that his momma acknowledges that he is there and holds his hand or gives him a kiss, rubs his head, talks to him, feeds him, and keeps the sun out of his eyes. That enough isn't it? It should be. It is. He is happy. At least that is what I have to try and make myself believe. But it's not something I can successfully believe. I can however, put on the mask and the smile and laugh and make everyone else think that yeah, he is good, I'm good, this is good, and he is ok. But I don't know if it is. I know it is not for me...but he can't tell me if it is for him.
I guess this turned into a journal entry of sorts. I have always strived to be transparent in our journey. So this is as transparent as it can be today. This is my struggle. My struggle for my children.
Out of the $3,333 that we have in our HHL campaign right now, we've requested that a portion of that be used to purchase safety sheets for his bed. We have not received our "yes" or "no" yet, but when we do, I will share that with you as well.
We have some VERY bad weather heading this way. Expected to hit arouind 3am. I will be home alone with the boys. I have so much fear and anxiety about these types of storms. We were victims of Hurricane Michael and that was BEFORE Dale and Zack. It definitely sits differently with me now that i have them and have to keep them safe alone. Or try to. Prayers would be greatly appreciated for everyone that is going to be hit with this weather.
God Bless you all and have a wonderful night.
January 1, 2024
12/31/2023
The last update of the year. Wow. I can't believe we're already heading into another year. Another year of seeing what God has written for us.
The boys are too be starting homebound services for school since they have both been pulled out by their doctor. Getting paperwork finished, turned in and things started is DIFFICULT. I HATE the system. I really do. I will be SHOCKED if they actually get more than 1 month of school services at home once everything is processed. Sometimes it just feels so pointless.
As far as fundraising. I'm still doing it. But, after talking with my Mom and my "girls" some realizations were made and so where some changes. I'm NOT going to fundraise like I have been. I've been doing it for 3 years, 2 years HARD and am making no headway. We have $3,333 dollars and at that rate Zack will be an adult before he ever gets a Trexo. That is with me doing fundraising FULL TIME and it is just not worth it. I want my children to remember ME. I want them to have memories of me doing things with them, being there for them, loving them, fighting for them. But that doesn't happen when I am telling them to hold on, just a minute, I have to finish this, I'm busy...This year I have missed out on so much of them and I hate it. That is time that I cannot get back. So, I choose them...while I WISH I could get him a Trexo and I WISH he would be given the opportunity to walk, I also WISH for happiness and love. The happiness and love is more important than anything.
The Trexo is a dream. It's not something families like ours will ever be able to afford. Sadly. We just don't have that kind of income or support. To those that are able to get it, kudos to them. Maybe one day it will be something that all families will be able to give their child if the need is there. Maybe someday the dream will come true for us. But, with 3 yeras of fundraising, 2 years of fundraising HARD, being on the Trexo wait list for over a year and having to tell them for the 3rd time to move us to the bottom; the stress that it puts on me and the kids, the time that I invest in fundraising and not with my kids...I just can't do that anymore.
The last 2 fundraisers we've done, we haven't even received funds for. Funds were supposed to be sent directly to our Help Hope Live campaign and NOTHING. I don't even have the energy to fight for the funds we raised. The silent auction we attempted to do fell through because the venue didn't get finished in time. The items I gathered for that are not big ticket enough items that I fell would even be suitable for a silent auction. Gift Certificates that were donated have expired...most of them were only good for 6 months and I got them in June. So, the time and energy that I put into even trying is time and energy that I don't have with my kids, and I want with my kids.
I reached out to some big time TikTok creators and asked them to make items to be donated to the silent auction and all of them said they would, but none of them came through. The work that I put into it and the let downs that keep coming are just not feasible for me right now. I'm tired of being let down. I'm tired of fighting a fight that I am obviously not going to win. I throw in the towel.
Zack has been having stronger and longer seizures. I think I updated that I had to administer his emergency medication for the first time ever. So now I am on edge with that. We've had a referral sent to Sacred Heart in Pensacola for a epileptologist and neurosurgeon to discuss some possible options. The only surgical one that we are considering at this time is VNS not RNS. I will not do brain surgery on my child unless it is life or death. Not happening.
Dale had a stye on his eye and has had it for awhile. The large area went away but his eye is still VERY red so we get to go back to the doctor for that this week.
I just want to remind people that everyone's trauma is different and everyone experiences it differently. What might be OK for one person, might not be OK for another. What is handled well by one, may not be handled well by another. What is catastrophic to one, may be silly to another.
Administering emergency medications to my child for the first time was devastating to me. I was scared to death. Unresponsive took on a whole new meaning for ME. Our unresponsive was eyes rolled back into his head, shaking uncontrollably, breathing fine, heart rate fine, but not responding to verbal cues or physical stimulation. That to ME was CATASTROPHIC. By the time that his father got here, I was bawling and had him in my arms. Jeffrey had to pry him out of my arms. I didn't want to let him go. The medication doesn't SAVE him. It hopefully stops the seizure. But, in all reality...in MY reality...any seizure, any one seizure; big, small, short, long...ANY of them could be the one to change the course of our lives FOREVER. That is a hard reality to live with. Most of the time I handle it well...but after build up and build up and build up of stressor upon stressor upon stressor...there will always be one thing that pushes someone over the edge.
I'm tired. I'm going to go snuggle the last day of 2023 into an afternoon nap with my boys. We hope you all had a MERRY CHRISTMAS and will have a BLESSED NEW YEAR!
Thank you all for continuing to be here with us. We appreciate all of you.
I have uploaded some new photos to the Zack and Dale album.
November 28, 2023
11/28/23
Today is Giving Tuesday. I've made our posts, but definitely have not put the effort in to raising money like I usually do. I did all this work, put in my heart and soul, stole time I can never get back with my children to try and give 1 child the opportunity to walk. It's doesn't make a difference. 3 years in and we've raised pennies in a bucket for a goal that is just unrealistic.
With them money we have raised, we can use it for other things. I've put in a request for a special needs swing for our back yard swing set so he can swing in his yard.
Safety sheets for a bed are $250 for 2 sheets and we need those as well.
There is a float that is $300 that is made for kids/people like Zack and I am debating on getting that for him.
Rest assured we CAN NOT ACCESS THE MONEY IN THIS CAMPAIGN without approval from the financial department and approval of doctors.
Thank you all for continuing to follow us and support us. We appreciate all of you and God Bless you.
This is my update from 6 days ago on their Facebook Page:
I have been trying to figure out a way to say what I want to say, but the words just won’t come in a easy way. So, I will just say it.
My heart is heavy for my child. Zack has been going through it since July. With the unexpected, extra trip to pulmonary this month Zack was placed in indefinite medical leave from school. With that came cancelling TONS of appointments for both him and Dale including, but not limited to, our Trexo sessions.
So many questions arise: Has he been sick so long because I am pushing him too hard. Has he got weaker in my efforts to make him stronger. Is he stressed? Does he feel my stress? I WISH HE COULD TELL ME.
With the illnesses, 29 minute seizure, & back to back seizures he has gone through several med changes the past few weeks increasing seizure meds, MORE steroids and a change in his inhaler. It is hard to watch him go through these things and feel so helpless.
I have put pretty much all trips to Birmingham on hold for now. We will not attempt to resume the Trexo until we see Rehab Medicine again in January.
As I reflect on all the time and energy that I have put in to awareness, fundraising, grant applications, foundations, events and I don’t know what else; I feel like a fool. For 2.5 years I have been trying to raise a massive amount of money, $50k, for my son to walk. In January 2024 that price goes up making the need for $65k in order for him to walk. It is not going to happen. Unless there is a miracle, it is pointless. That is a hard pill for me to swallow.
I feel like I am giving up on my child. That if I am not fighting for his quality of life then no one else will either. But, in reality, all this time, I have been fighting the Trexo dream alone all this time. Is there a reason why I can’t make this happen?
Well, I have been told we are no body…we have no roots in this town or anyone else and when you don’t carry a name with backing and status then you will not succeed. He is not terminal. So, because he is not dying, he doesn’t deserve a better-quality life?
On top of these conversations, on top of the helpless feelings and the research and the sleepless nights. The events I have dragged my family to, the effort, the excitement, the let down and heartbreak, when we could have been doing something different. It is not feasible. No one REALLY cares. No one is interested. Our story is not a gut wrenching one to anyone but me.
No one knows what we REALLY go through. How I watch my child be trapped in his own body during a seizure. Wondering what damage each one does. Will the next one be THE ONE. Or now…being strong enough to defy the odds, and all of a sudden too weak to go to school indefinitely. Requesting and then demanding certain tests to check his already damaged brain, or to see if the cyst has gotten better and we may have to discuss a brain surgery.
All I have ever wanted was for my kids to not have to fight so hard to live, to be included, or to do the things the rest of us take for granted.
But it is time to step back. Still fight, but maybe not so hard. Give it to God.
October 3, 2023
10/3/23
Earlier today I had made a tough decision to lower our goal to $25,000. That will get the Trexo in our home for 1 year. That is 1 year of daily usage that could change Zack's life in so many ways. 1 year of documenting the usage and sharing the benefits to maybe raise the other $25,000 needed to own this amazing piece of equipment and better is life forever.
Then, I received another DENIAL letter from another foundation. Because the Trexo is not "medically necessary". I replied to them with information that I have researched over the last 2 years on the Trexo and how it has changed the lives of children that have used it. I did explain that the cost is what makes it deemed unnecessary and not the actual benefits, and that while I understand that I needed to educate them. Is it going to change their decision? No. Will they respond? I don't know.
I just happened to think this morning...how bad I want to OWN this equipment, so I don't have to worry about it ever being taken away. BUT what a difference it could make if we could use it for one whole year. And maybe just maybe, documenting and sharing his journey would make it possible for us to earn the other $25,000.
So, that is why you see a DECREASE in our goal amount. Because even 1 year of usage could change Zack's life. Could build those pathways in his brain and teach him to do so many other things.
I need to go pick the boys up from school. But just wanted to give you a quick update.
September 23, 2023
9/22/23
Goodmorning. It seems that the boys are STAYING sick. I guess school germs. Maybe. I don't know. But it STINKS. Dale was up all-night last night with a cough so we stayed home from school today.
Dale, Zack and I are embarking on uncharted journeys. We now have to travel alone to our appointments that are 4 hours away. Usually, I do it alone with JUST Zack, but now all 3 of us get to go. It was TOUGH. But it wasn't HORRIBLE. What doesn't kill you makes you stronger. Right?
We've had 2 Trexo visits recently. I'm not sure if I posted about the other one or not...and forgot to go back and look at the last update...so...ya know.
Here is the recap from earlier this year when we used the Trexo for the first time EVER.
Weekly Trexo Updates:
1/23/23: 141 steps, 14% Initiation, 15 minutes FIRST TIME IN THE TREXO
2/24/23: 315 steps, 16% Initiation, 15 minutes
3/2/23: 390 steps, 16% Initiation, 12 minutes
3/10/23: 375 steps, 24% Initiation, 14.5 minutes
3/17/23: 333 steps, 25% Initiation, 12 minutes 6 seconds
3/24/23: 424 steps, 25% Initiation, 12 minutes 26 seconds
3/27/23: 495 steps, 30% Initiation, 13 minutes 37 seconds
4/7/23: 554 steps, 29% Initiation, 15 minutes 7 seconds
4/14/23: 599 steps, 32% Initiation, 14 minutes 42 seconds LAST TREXO SESSION
We resumed "treatment" with the Trexo on:
9/14/23: 330 steps, 21% initiation, 9 minutes 56 seconds
9/21/23: 431 steps, 15% initiation, 12 minutes 31 seconds
You can see that our results this time are not as good as we were hoping for. He has significantly regressed. I've even changed the way we travel, instead of doing the entire trip and treatment in a day, we go up the day before, stay all night at Ronald McDonald House and head home the next day after treatment. But that doesn't seem to help like I was hoping. It's heartbreaking to watch the struggle that he goes through to just be as "normal" as possible. It is really heartbreaking to put the work in to your child and see them just give up. I saw that yesterday. He could have literally gone to sleep while walking in the Trexo and he did try. But his therapist would not allow it, (which is good).
In the spirit of true transparency, which is what I have strived to be alone this journey with our supporters...Mama is tired. I'm burned out. I do and do and do and do and very little progress is made. I've researched, done the assessment, joined the virtual sessions, applied to foundations, set up at vendor events, placed donations jars in places I can, emailed, called and written over 300 companies, gone door to door to local companied, done radio interviews, news interviews, made videos, taken pictures, explained in detail, tried different fundraising opportunities and we just dropping pennies in the bucket.
I've been fundraising over a year for this equipment. I've taken him 4 hours a way for a 1 hour PT session, to use the equipment for 20 minutes in each session, we go to therapies, we do exercises at home, I do ALL the things and I just can't seem to make it happen for him. Why? Why can't I make this happen?
We currently have a fundraiser going from now until 11/15/23 with Johns Crazy Socks. So, if you want to order some fun socks for Christmas gifts, please go to:
1. www.johnscrazysocks.com
2. Add some cool socks to your cart, when you add the first pair, a window will pop up and at the bottom of that window it says: CHARITY CODE HOLDERS CLICK HERE (Click there). ***If the mystery socks do not show up in your cart when you click this, click it again...this is the step that ties your purchase to our campaign!
3. A pair of MYSTERY socks will be added to your cart. KEEP SHOPPING. When you go to check out use discount code HHL23 and you will get your mystery socks for FREE and we will earn a portion of your purchase for Zack's robot legs.
We thank you all for being here. Blessings to all of you.
September 4, 2023
9/4/23
I thought this part of our journey was well behind us. I wake up early every day to get some work done before the rest of the house wakes and comes to life. Today I heard the gut-wrenching sound of a croupy cough. I knew immediately which child it was...Zack. I run...I run I grab him I assess him as I run to get Jeffrey with him in my arms. I quickly turn on the light, lay him in bed with Jeffrey and tell him to "GET UP HE IS HAVING TROUBLE BREATHING". Jeffrey has just been woke up out of a dead sleep by a panicky mama. I continue to yell "GET UP JEFFREY" as I run through the house to get Willis (Our nebulizer). I get Willis hooked up and Zack in my lap for a breathing treatment so I can assess him fully while I administer the breathing treatment.
Dale has some steroid left over from when he was sick 2 weeks ago. I don't know why we had extra in the bottle, maybe by the grace of God...but I administer all his meds plus a dose of the steroid. Thanking God, we had some left and it's enough to get us to Tuesday when we can see our doctor.
I notice that he is retracting, he is not breathing as easily as he normally does. We know with a croupy cough that the airways are swelling. I'm thinking of all the things...grab the pulse ox...as I do that, I grab the probes I saved. BUT I CAN NOT GET THEM TO FIT. I am opening all the probes and shaking as I try to attach them (completely forgetting there is an entire cord that has to be attached before you can hook up the probe). It's been so long since we've had to use this machine.
Through my head I am going through it all...Our peds office is closed because it is a holiday. Our pulmonary doctor does not have an on call number. Our ER is not #1 when it comes to treating kids like Zack, but good if a transfer to COA is needed. Do we need COA? Do we need an ambulance? No, no we can do this, we just need OXYGEN, which we don't have anymore because he has been doing so good for so long.
Ok Trish...Breathe. Take a deep breathe and think. I make a post on Facebook for all my medical mama friends that have O2 if we can borrow any. I have a friend an hour and a half away that was willing to start driving if I could start driving to meet me with O2 tanks. I have a medical mama 3 miles away that told me to come get a tank and asked me what other supplies I needed.
He's cyanotic but I CAN'T CHECK IS O2 LEVEL because I forgot you have to hook the other cord up first. I am beginning to panic.
What do I do. I lay him down his lips are turning blue, he is retracting...what are they going to do differntly that I can't do IF I JUST HAD O2. I know my child...THINK...YOU KNOW YOUR CHILD BEST...THINK.
Jeffrey gets Zack and takes him to the bathroom for a steam treatment as I grab Dale, run to the van in my night gown and put him in his seat and zoom to Kristen's to get the tank and probes. Got it...Video Jeffrey and Zack is OK, the steam is helping.Come back and get him out of the bathroom. He is so exhausted but not breathing as badly. I try to turn the O2 on but they now have a different set up than when we had O2 so I have to video chat Kristen to ask her how to turn it on. We get it...I don't have a nasal cannula but I do have a mask. I get him masked and he is not fighting it. It's like he knew he needed it too. Jeffrey holds him while I STILL CAN NOT GET THIS PROBE TO FIT THE DAMN MACHINE.
Finally I just sit down and take Zack and give up on the machine. I can count his breaths. It's fine. I can watch for retracting, I can manually assesss him. I don't need the machine. Jeffrey comes and looks at the machine and as he picks it up the other cord falls out and I scream...OMG YOU HAVE TO HOOK THAT CORD UP AND THEN PLUG THE PROBE INTO THAT ONE. He does...we get a probe on and the red light quits working…get another probe and get that one hooked up. He's reading in the low 90s, dipping to the 80s, and after having the O2 on for awhile he is up to 99. Shew. Shew. Ok...we're good. He can breathe, I can breathe we can all breathe.
He's OK now. Lots of fluids, still sounds like crap. But he has 2 O2 tanks here thanks to our dear medical mama friends, we have probes, we have a nasal cannula and we have more medically fragile friends that have our backs than I ever thought we would have or even need, and I am so grateful that with our medical mama friends we were able to avoid a hospital and deal with this at home.
August 19, 2023
8/19/23
Hey everyone! It has been a BUSY summer! For the first time since the boys were born at 26 weeks we have LIVED. I mean LIVED. We have done ALL the things, planned even more things and although it has not been easy, we have had fun.
We've done fundraisers, we have set up at events and told others about Help Hope Live and how it can help other people in similar situations. We've also planned more events for the fall. I'm super excited to be sharing the word about HHL.
Fundraisers we've done this summer:
Basket Fundraiser: $1500 (not reflected on HHL page)
SweetCreek Fundraiser: $37 (not reflected on HHL page)
Bringing our Grand Total right now to $4347 for Zack to get an at home Trexo Robotics.
Currently, we're doing a fundraiser with Remedy Me Spa, a local spa, and they put together a "basket" with a service from each provider, valued at $255 and we're 1 week away from drawing a winner for that! Whoever wins that is going to be super rejuvenated. If you're local and you want to enter to win just visit us on facebook at www.facebook.com/twindayz
Kids Wish Network granted a wish for Zack. When we filled out the application they asked us for 3 wishes and they gave us 3 categories. We chose a Trexo, to meet Walker Hayes and to go to an indoor waterpark. One of these wishes were granted and the reveal will be coming soon. I've been TRYING to work on a video but sheesh it is not easy. Kudos to those that do it quickly.
Over the summer we were reunited with our twin friends Benji and Teddy and met their new sister. We've been to the water park in Florida for Daddy's company picnic, the water park here in town twice. We've been bowling, we went to Kentucky and spent time with the grandparents and the boys met their other big sister for the first time. We've been to bike night and some other events to try and raise money for the Trexo.
We have several things planned for the fall as well. The boys have started school and I HATE it. I hate being away from them. This will be the last year they get to go to school because our city schools are terrible, and I am NOT going to let them go. So we will be a homeschooled family.
Y'all have a wonderful weekend. Stay blessed.
July 24, 2023
7/24/23
Today we did an interview with the Mark White Show! I am super grateful for the opportunity and Mr. White is exceptionally wonderful.
Our basket fundraiser ended last week. We raised $1500 even! I am so thankful to all of the local businesses that donated items/gift cards to fill our baskets. Each basket was over $400 in value. Thank you to my friend Jessica for helping me coordinate everything and making the cute pictures of Zack!
Thank you to the businesses: The Stockyard Headland, 3 Lil' Cookie Monsters, Pics By Ty, The Flour Sack Bakery, Moo-Cow Designs, Barberitos, Whit B' Stitchin', MoonFlowers Wellness Spa, Alpine Dreams on Foster, Patricia Lanes, Wolf Gang Bakery and Grooming, Harley Davidson of Dothan, Shutes Pecans, Todd Farms, Dothan Mercantile, Jessica Sanford Photography, Dakota Coffee, The Byrd Feeder, Build a Bow Boutique, Axtion Air, Massage Envy Palms Terrace, RiverBirch Embroidery, Scentsy by Melissa, Joe Winks Barber Shop, Bama RV, Maddie Grace Designs, Little J's Smocks, Alabama Sunshine, BB Reids, Something to Talk about, Beads + Beyond, Southern Grace Company, Rug By Courtney, The Grille & Oyster Bar, Mr. Coffee Bean, Tee's In the Frame Photography, Stacey's Unique Creations, The Pop Shop, Ketchems, Jakia P Photography, Cotton & Clover, Remedy Me Spa, Two Moms & A Daughter LLC, Bark Avenue, Door Hanger By Amy, Sweet & Sassy, and Crumbl Cookie.
With that $1500 we have purchased a new bath seat for Zack, and paid off the remaining balance of his Pickler Triangle (a therapy tool), leaving $1200 to apply to HHL bringing the total to $4000 (not reflected on the campaign yet).
The boys and their sister had a BIG weekend. They went to a pool party for one of their school friends who turned 4. We all had a blast. Then yesterday their sister turned 14 years old and we had a STITCH themed party at our house for her. Everyone had a good time. I'm thankful for that.
Over the summer Dale has blossomed into a spunky little toddler. Some of the things he says and does makes me wonder where the time is going. It also makes me sad sometimes to think that all things he does, Zack is supposed to be doing too. That's the hardest part of this journey. My babies are perfect to me, but there are so many things that they were supposed to be doing together and they're not. It does make me sad.
Also wanted to say thank you to Bella's Bumba's for Zack's new wheels. We adore their wheelchairs and we will be giving away 2 of them this winter for 2 mobility limited children! We can't wait to get that organized and together.
We thank you again for continuing to be a part of our journey. Have a blessed day!
July 7, 2023
7/7/23
Hey everyone! How are you? We're doing OK. Right now Dale, Zack and I are battling some vicious congestion and just plain SNOT. It is AWFUL. I hope no one else is going through this.
We hope everyone had a wonderful 4th of July. We went to the local fairgrounds and hung out, ate, and watched the fireworks with friends that are family.
We're gearing up for lots of things. We're going back to Harley Davidson of Dothan on 7/14/23 for bike night and will be setting up a Help Hope Live table trying to raise more money for Zack's trexo.
Currently we have a basket fundraiser going on and the baskets are AMAZING. We have 4 of them that my friend Jessica and I are trying to sell tickets for to do a give away. So far we've raised $1310! It does not reflect on our goal meter yet because we're still raising money.
We're also currently doing a WHARF fundraiser. A local seafood restaurant. It's food for funds. You purchase a $30 shrimp boil bag that feeds two people and we get a portion of the proceeds. So, we're doing preorders for those until 7/23/23 and pick up will be on 7/29/23.
Lots and lots of efforts going in to raise money for our boy to walk! Prayers would be appreciated. We thank you all for your continued support.
June 28, 2023
6/28/23
Good Morning! Sorry I have not updated, we have been so blessed with lots of summer activities! Zack and Dale are having a blast with their big sister Aleigha and lots of friends!
Since my last update we've done even more exciting things. Zack and Dale went to their first concert last weekend at the Panhandle Watermelon Festival in Chipley Florida. It was a Collin Raye and Easton Corbin Concert. We mostly went for Collin Raye (he's one of my favorites) and it was amazing! Zack LOVED it. He really enjoyed it, and I have to admit that I was a little nervous because of the sound and vibrations but he smiled and laughed the whole time! Dale was distracted by the bounce houses and did not want to watch the concert so we had some meltdowns, but when they took the bounce houses down for the evening he started dancing and having a good time to the concert. Aleigha of course hated it. At 13 years old she has no idea who Collin Raye is, has not ever heard any of his songs and said that I was embarrassing.
The boys and Aleigha were treated to a trip to the local water park last night. Mommy got to go too. We met up with another friend that also has twin boys while we were there. We've all known each other for years and our boys have known each other since her boys were born. I love seeing them together.
We're currently doing a local basket fundraiser. A friend of mine and myself have been able to get donations from local businesses and put together 4 absolutley amazing baskets to draw for. The drawing will be this Saturday. These baskets are AMAZING. Massages, food, coffee, items, tumblers, door hangers, nuts, jelly, jam, BBQ sauce...SO MUCH STUFF. I'm going to be jealous of every single winner already! LOL
Dale has been having some issues where when he falls he has these breath holding spells, passes out and then has a seizure. He has quit breathing and turned blue and seized 3 times since February. Each one getting worse and worse. I'm terrified. He has had an EKG and his ferritin level checked. But the other day it happened and he scared me to death. After we discovered that he was OK I went to the kitchen and cried. Then I went to the bedroom to talk to his sister about yelling for me as soon as it happens. Not to wait because she is scared...she has to yell IMMEDIATELY and Dale crawled on the bed and said, "Mama I not want die". That broke me. Literally broke me. This life is so hard. It's so scary. I'm grateful to have my children and I love them and have learned so much, but the fear instilled in me every single day is hard to deal with.
This weekend we're going to the fireworks here in town and horseback riding with one of our Miracle League friends! Super excited to go horseback riding.
We're still waiting to hear back from Kids Wish Network on what Wish has been approved for Zack.
Thank you to all of our supporters, prayers and donators! We appreciate you so much!
June 11, 2023
6/11/23
Hey! I have lots of pictures from this weekend! I can't wait to share them with you. I have to load them one at a time though so it's a slow process.
On Friday night we went to Harley-Davidson of Dothan, Al and participated in Bike Night. We were invited to sit under the Hog tent and they had a 50/50 raffle. The winner of the 50/50 raffle donated their half of the money back to Zack and Dale which was a complete blessing. We left the even with $804 (That has been applied to this campaign page) towards a Trexo Robotics for Zack. We had a blast, the food was great, music was great. So many friends and family came out to support us. We will be setting up again at Harley Davidson of Dothan on July 14th, 2023 with our own tent.
Saturday was their dad's company picnic. We went to Shipwrecked in Panama City. It is a waterpark. Of course, everyone had a good time, only one person got burned because they did not put on sunscreen and his name is JEFFREY. LOL Zack has grown out of the float he had last year that we loved and worked wonders for him to be able to independently moving in the water. The one that I ordered off of Amazon this year did not work for him so I am extremely disappointed and on the hunt for a new one.
We are so grateful for everyone's support and can't wait for our next event.
God Bless each and every one of you.
June 7, 2023
6/7/23
It is ALWAYS crazy around here. I barely have time to go to the bathroom anymore!
Aleigha, the boys' half sister is here for the summer! She will be 14 next month. I'm excited that she is here!
Friday night we have our fundraiser at Harley Davidson of Dothan from 6p-9p. I'm trying to bake and decorate cookies to take with us. I have to write a speech. Make donation cards. Still do day to day life. Etc etc.
Dale fell the other day and had a seizure again. This is the second time so we're now being referred to Neurology. Hoping that the same Doctor that sees Zack will accept Dale even though he is not accepting new patients. (Got the call that he will accept him! Yay!)
Zack is doing well. He loves having his sissy here. She snuggles him and he falls asleep in her lap every single day. She has learned to feed him too!
This weekend we get to go to ShipWreck Island in Panama City for Jeffrey's Company Picnic. Last year when we went this was the first placed Zack initiated walking, in the water with his float. I'm hoping he will do it again this year. We had to get a different float though so I am hoping it works.
May 20, 2023
5/20/23
I have got to post some photos for all of you! It's not an easy process from my phone but, I will work on it. I promise.
This past week at therapy, Zack was able to use a "track" in the Neuro Clinic. They suspended him from a Track that is installed in the ceiling and put a harness on him and his AMAZING PT and OT moved his legs in walking form. HE LOVED IT. It's not the Trexo, but he enjoyed it. He cried when they took him out of it so they put him back in.
Friday, June 9, 2023, Harley Davidson of Dothan, Alabama is having their monthly Bike Night and will be doing a 50/50 raffle to benefit our Help Hope Live campaign. We're SO grateful for this opportunity. I'm very excited and nervous to speak in front of a ton of people. LOL
I'm still trying to come up with and am open to ANY suggestions on fundraising. So if you have any please let me know.
WE ARE NOW HELP HOPE LIVE BRAND AMBASSADORS! I am so very excited to represent this organization!
May 9, 2023
5/8/23
Things have been crazy around here, as always. Trying to do fun things, maintain daily life, and still fundraise is not easy when you're the only ONE doing it. I'm still trucking along though. Trying so hard to be everything for everyone, but especially for Dale and Zack.
They had their last Miracle League Baseball game this past Saturday. It was bittersweet. I hate that it is over already and cannot wait for the next season. Jeffrey took Zack out of his Bella's Bumbas Wheelchair and stood him up to bat and at the bases. At 1st and 2nd base Zack initiated some steps. But just as I feared, his strength and stamina are decreasing. It's sad for me to see because I know how hard he worked during the 8 weeks we were blessed to be able to use the Trexo.
Today Dale woke up at 4:30am holding his right ear, so we went to the pediatrician's office for the 2nd time in a few days and this time I went ahead and took Zack too because he hasn't been feeling well either. Since he can't tell me what is wrong, I try to be even more diligent in keeping an eye on his symptoms when Dale presents with an illness. Ironically, they BOTH have a right ear infection and will be starting antibiotics tonight. I am opting to keep them home from school and therapy for the week because we need this illness gone. They have been congested and snotty for a couple of weeks and I know that it is physically taking a toll on them. Especially when they're up coughing throughout the night.
Friday we're going on an overnight trip to watch our very good friend graduate medical school! I am so excited and proud of this young man! The graduation is in Auburn, and they have built a brand-new handicap accessible park up there so I'm hoping we arrive in enough time on Friday to go play for a little while and then Saturday we will go to graduation and come home.
Sunday we were supposed to go to Jacksonville, Florida to meet up with a friend that I have known for 4 years but never met face to face. It was the only thing that I wanted for Mother's Day. Her son passed away in January and they're taking their other 3 children to Disney for a few days. But I don't think it is going to work out for us. It makes me sad because I really wanted to meet them and hug my sweet friend, but they're from Canada so it's not so easy to make plans. Someday it will happen. Just not now. It's a 4-hour drive for us to get to Jacksonville, and the time we had hoped for they will still be at Disney for a Mother's Day Brunch, which she so deserves! So, next time. I guess we will just stay at home and relax. Although, I'm not really sure that Moms ever really get to "relax". LOL
Thank you to everyone who continues to support us, share our story and help us fundraise. It means everything to us.
April 21, 2023
4/21/23
Today we would have been headed to a Trexo appointment had last week not been our last one for quite awhile. We have to wait to get new prescriptions and schedule again with our therapist. We're shooting for the fall or winter. We also have to arrange it with our dear friend that keeps Dale for us while Zack and I go to Birmingham and their Dad works. So it is just a lot of logistics.
It truly does make me sad that we can't continue right now, but I was starting to become overly exhausted. Those trips are hard on us. We leave at 4:30am, drive 4 hours, have 1 hour of therapy and drive another 4 hours home. It's not easy. But I will do whatever I can when ever I can to help BOTH my boys. I want them to have as normal of a life as possible and that includes whatever I have to do to allow Zack to walk.
If you would like to help us get a Trexo for home, please donate to this campaign and please share. We appreciate any and all help. Thank you.
April 15, 2023
Weekly Trexo Updates:
1/23/23: 141 steps, 14% Initiation, 15 minutes FIRST TIME IN THE TREXO
2/24/23: 315 steps, 16% Initiation, 15 minutes
3/2/23: 390 steps, 16% Initiation, 12 minutes
3/10/23: 375 steps, 24% Initiation, 14.5 minutes
3/17/23: 333 steps, 25% Initiation, 12 minutes 6 seconds
3/24/23: 424 steps, 25% Initiation, 12 minutes 26 seconds
3/27/23: 495 steps, 30% Initiation, 13 minutes 37 seconds
4/7/23: 554 steps, 29% Initiation, 15 minutes 7 seconds
4/14/23: 599 steps, 32% Initiation, 14 minutes 42 seconds LAST TREXO SESSION
Yesterday was bittersweet. It was Zack's last session in the Trexo until we can get the doctor to write a script for another 6-8 week session and get insurance to cover say it is OK too. My Mama heart is so heavy. As you can see from the weekly update chart, his progress was greater and greater every week. At this last session, while his therapist went to get the Trexo, I continued his warm up exercises with him and he stood, unassisted, for the very first time. I then recorded it, while she provided the "just in case he falls" hands around him and I captured it again. It is amazing to see him doing these things when we were told that he would never do any of them.
I am of course, terrified that he is going to lose what he has gained. Sometimes there is a regression period. And with us not having a Trexo to use at home, if there is a regression period then there is no way for us to regain it and keep "training his brain" to walk. If this kind of improvement happened over a 1 hour session per week for 8 weeks, what could happen if he used it EVERY DAY.
While in Birmingham we stayed all night at the Ronald McDonald House. This was my home for 6 months while the boys were in the NICU. It was also ultimately their FIRST home too. Because we had to wait for their Dad to come get us after he finished a week of work, the boys and I stayed at the Ronald McDonald House together for 4 days before Jeffrey was able to bring us all home. Home to home that the 3 of us had NEVER been in before. While in the NICU the home I went into labor in, started showing signs of heavy black mold. So Jeffrey and my best friend had to move us in to another house. A house we had NEVER been in.
We stayed this weekend because this was the annual RED SHOE RUN weekend. The BIGGEST fundraiser of the year for Ronald McDonald House Charities in Alabama. We've participated in this fundraiser since 2020 and will do so every year as long as it is around. I hope that when the boys grow up, they will also participate. Every year their grandmother and I team up and do a birthday Facebook fundraiser for the Red Shoe Run. (Mine and my mom's birthdays are 3 days apart). This year, she did it on her own because I am fundraising for a Trexo. My Mom raised $430 this year for team ROCKIN' ROBINSON TWINS. Sadly, our team only consists of me, Jeffrey, Dale and Zack so it is tough to raise much more than that. My Mom makes it happen every year though!
We had a blast finally being able to attend the Red Shoe Run in person this year, and also being honored as a mile marker family! We met so many other wonderful families, the crowd that came to run was the biggest since COVID happened. I can't wait to go again next year. Next year Jeffrey wants to run the 5K and I would like to take part in the 1-mile Fun Run with Dale and Zack.
Go look for the album (here in a little while) with our Red Shoe Run Fundraiser photos!
If you'd like to follow us on Facebook go to: facebook.com/twindayz
Or you can follow us on TikTok at: mom2micromiracles
Please help us get this equipment for Zack. If you can't donate, please share it so that maybe someone can.
Thank you all so much!
April 13, 2023
Weekly Trexo Updates:
1/23/23: 141 steps, 14% Initiation, 15 minutes FIRST TIME IN THE TREXO
2/24/23: 315 steps, 16% Initiation, 15 minutes
3/2/23: 390 steps, 16% Initiation, 12 minutes
3/10/23: 375 steps, 24% Initiation, 14.5 minutes
3/17/23: 333 steps, 25% Initiation, 12 minutes 6 seconds
3/24/23: 424 steps, 25% Initiation, 12 minutes 26 seconds
3/27/23: 495 steps, 30% Initiation, 13 minutes 37 seconds
4/7/23: 554 steps, 29% Initiation, 15 minutes 7 seconds
I have been so busy that have not been able to give you last week's update. I'm so sorry. But look at that weekly update! I'm so happy for my little man! Not only did he kill it in the Trexo but he also pushed through from sit to stand last week and stood for the very first time. Yes, I bawled like a baby!
Tomorrow we all 4 travel to Birmingham for Zack's last Trexo appointment. (My heart is so heavy about this.) When we see his Doctor in July we will see if we can get another 6-8 week session for him in the fall or winter. But to be honest these trips are so extremely exhausting for the both of us. On the other hand, I will never stop fighting for my children. I will never stop advocating and trying to do the best things that I can do for them and I know that the Trexo is helping Zack SO much. If we had one for home it would be a life changer for him and our family for sure.
Dale also has an appointment in Birmingham tomorrow. It will be his first appointment with his audiologist since he got his hearing aids. So, his Dad will be taking him to that while I am at the appointment with Zack. Then we will be going to check in at the Ronald McDonald House and stay the night there to take part in the yearly Red Shoe Run Fundraiser for the Ronald McDonald House on Friday.
We are a mile marker family for the Red Shoe Run this year. We were supposed to have the honor of doing this 3 years ago and COVID hit so it was canceled 2 years in a row and then last year it fell ON their birthday so we were not able to go. We are extremely blessed to be able to take part this year though. Yes I am going to be the obnoxious, loud, overly decorated Momma too! Their Dad is going to HATE it! But, I don't care!
The boys have turned 4 since my last update. Their birthday was on Easter this year! I made a dinosaur cake and we had my parents here to celebrate. Small and simple. But we did have a big party for them on April 1 with all their friends. They had a great birthday!` I'm so glad that I can give them these experiences!
I have to go get them ready for school now so you all have a wonderful day!
March 27, 2023
I WAS ABLE TO FINALLY GET PHOTOS TO POST FOR YOU TO SEE! (Had to jump through a lot of hoops to get them, but I will always do what I can to fight for my children.) GO TO THE ALBUMS SECTION OF THIS PAGE AND LOOK FOR THE ALBUM: USING THE TREXO
Weekly Trexo Updates:
1/23/23: 141 steps, 14% Initiation, 15 minutes FIRST TIME IN THE TREXO
2/24/23: 315 steps, 16% Initiation, 15 minutes
3/2/23: 390 steps, 16% Initiation, 12 minutes
3/10/23: 375 steps, 24% Initiation, 14.5 minutes
3/17/23: 333 steps, 25% Initiation, 12 minutes 6 seconds
3/24/23: 424 steps, 25% Initiation, 12 minutes 26 seconds
3/27/23: 495 steps, 30% Initiation, 13 minutes 37 seconds
Do you see these amazing numbers?! Each and every time he uses the Trexo his numbers get better and better. Sadly, he only has 2 sessions left, 4/7/23 & 4/14/23. This breaks my Mama heart because the changes that we've seen in Zack since using this piece of equipment have been astounding.
Since his first time using the Trexo he has crawled, which at the beginning was sort of a bunny hop because he didn't know how to move his legs properly and now, he does. He is happier. His balance is better. He is trying to pull up on things. He is getting on his knees and playing with a piano that is about 6 inches high. His nystagmus has improved. He crawled to me and reached up for me from his knees for the first time. He also crawled into my lap last night and reached up for me. My baby is reaching for me letting me know that he wants me to hold him. All because of this piece of equipment! His balance has improved, he can sit "crisscross applesauce now", his head control is SO much better. He can now hold his head up the entire time he is in the Trexo if he is not in a mood!
Having this equipment at home for him to use every single day would make so much difference in his quality of life.
We're currently doing a car magnet fundraiser under the EVENTS section of this page. They're $15 and you get the car magnet, get it shipped to you and the rest goes into the boys' HelpHopeLive account. If you'd like to make a direct donation you can do that also.
We thank you for all of your support and please remember to SHARE!
March 15, 2023
3/15/23
Weekly Trexo Updates:
1/23/23: FIRST TIME IN THE TREXO 141 steps, 14% Initiation, 15 minutes
2/24/23: 315 steps, 16% Initiation, 15 minutes
3/2/23: 390 steps, 16% Initiation, 12 minutes
3/10/23: 375 steps, 24% Initiation, 14.5 minutes
Do you see that initiation jump?? He went from 16% to 24% and that is AMAZING. He is initiating more with his hip than his knee which is great because we've always had concerns with his ball and socket development due to not sitting, crawling or walking when he is "supposed" to be.
The Trexo is doing AMAZING things for him, and we see it trickling over into therapy, crawling, sitting, his head control and so many other things in our day-to-day life.
This past time we went to use the Trexo he held his head up nearly the ENTIRE time that he was in it. And that is a huge improvement period. One thing he has always struggled with is head control and the ability to hold his head up for long periods of time. He also does not like when out PT pauses the Trexo to make an adjustment. He gets a little antsy when she stops it and wants to GO.
He was put into a non-robotic gait trainer again after the Trexo and he initiated several steps on his own.
I'm currently trying to get my "room of doom" (a garage that was turned into an extra room by the homeowner that I use for storage and a catch all room) organized and build shelving so that I can put Zack's equipment in there and he will have a little but further to work than he does in the kitchen. The house is just so small and everything is carpeted but the kitchen and the "room of doom". I've tried taking him outside to use his gait trainers on the pavement but it's not 100% smooth and he just doesn't have the strength or "know how" to do it on pavement just yet. But, we're hoping to get there. Eventually.
I'm still desperately trying to raise the money for him to have a Trexo at home. This would make such a lifelong difference in his life. In all of our lives. The quality of life that he would have with this equipment would be exponential!
Zack and I will travel 4 hours to his Trexo appointment again this Friday, have a 1-hour PT session and then travel 4 hours back home. I will do this for my child as long as I am able to. But our time is running out. We're only scheduled for a few more sessions before our Trexo time is over and I do not want it to end.
Thank you for being here! Thank you for your support.
March 5, 2023
3/5/23
WOW! Zack used the Trexo on Thursday this week instead of Friday. Before he got in the Trexo he was fitted with his new Cascade AFOs and they are amazing. We've had NO issues out of these braces at all. I really like these AFOs. He has not fussed in them at all. They then proceeded to take him to a machine that she put his feet on and it vibrated his entire body. He loved it. We do have one similar to this on his Amazon birthday wish list. She stated that it is to wake up his muscles.
He was in it for 12 minutes and he took 390 steps and he initiated 16% of them again this time. His Dad and brother, Dale, was with us this time and for the FIRST TIME EVER my children walked side by side. I SO wish that I could share these videos with you but it is against the facility's policy. I'm grateful just to have them.
He LOVED it. We did not have to use any motivational techniques this time like his toys. They paused it briefly to make an adjustment and he was TICKED. He threw his head back and whined and started trying to push the Trexo forward with his body.
After the Trexo they put him in a regular, non-robotic gait trainer and he initiated 10 steps! Since being home, he has only had the support of his Dad or I holding him at his hips and the support of his AFOs and he has initiated a few steps that way!
This was our 3rd time in the Trexo and we're already seeing improvements! We have 4 more sessions and this amazing opportunity will end, but with your help we can get one for home use and be able to use it EVERY DAY.
Song credits: Eye of The Tiger was the theme song my cousin, Deanna, gave Zack when he was in the NICU.
February 28, 2023
2/28/23
On Friday 2/24/23 Zack and I got up at 4am, left the house at 5am and headed 4 hours away for his (now weekly) trip to have a 1 hour Physical Therapy Session. During this session pre-Trexo exercises are done and then he is placed in the Trexo the last 15-20 minutes of his appointment.
He did GREAT. He was happy and outgoing. When placed in the Trexo, it took some time to get it adjusted and we need to take an array of shoes to use this week, but it went well. He spent a total of 14.5 minutes in the Trexo, took 315 steps and HE initiated 16% of those steps! This is an increase from his first use on January 23, 2023 where he took 141 steps and initiated 14% of those.
Weekly Trexo Results:
1/23/23: Steps: 141 Initiated: 14%
2/24/23: Steps: 315 Initiated: 16%
**Dale received his hearing aids yesterday. 2/27/23. Surprisingly he has done WONDERFULLY with them! They are blue and orange for Blippi so we're calling them his Blippi Ears. He has been wearing them with no problems whatsoever. He has had them in all day today except for nap time at school. Batteries have to be changed weekly and we have to buy drying pods for them so that is going to be an expected cost that is going to add up to be a lot.
We're still waiting on our insurance to approve getting diapers. Two Twiddlers (Twin Toddlers) in 2 separate size diapers is EXPENSIVE!
February 3, 2023
Hello everyone! We've been so busy with appointments I have not had time to jump on here and give an update. We ended January with 33 appointments in the books. One of those appointments was on January 23rd where Zack got to try on the TREXO! (Sadly, we're not allowed to share the videos and photos right now). But he took 141 steps in total and 14% of those steps HE INITIATED. How amazing is that. We were then presented with 2 options for him to use the Trexo with a period of time. But, with it being 4 hours away, me having 2 children and not much help, we went through the ringers trying to figure out a way to make it happen.
Option 1: 6-8 weeks of Trexo use, 1 day per week for 1 hour. That would require driving 4 hours, using the Trexo and driving home 4 hours with both boys. Not possible. For one, I had no one to go with me. When having both boys I need someone to help. They help with g-tube feeding Zack while I drive, occupying Dale, diaper changes and then of course keeping Dale occupied while I am at the appointment with Zack. Otherwise, Dale would be expected to sit quietly for the entire hour after being locked up in a car seat for a 4-hour drive...If you've ever been around a 3-year-old, you know what is not going to happen.
Option 2: Drive 4 hours, stay across the street from the facility at Ronald McDonald House for 6 days and use the Trexo for 5 days straight for 1 hour. Again, not possible with no help. Yes, the Ronald McDonald House is an amazing place and yes, we've stayed there before, but with me being alone with two children, one needing to burn off energy, one needing to have a safe place to play on the floor, both with their own set of unique nutritional needs and ME, just not possible or safe. Dale would surely elope from the room while I try to go to the bathroom or shower.
After sending an e-mail to our team and telling them that it was just not going to be possible and crying the ugly Mama cry. I got a message from a friend that is family and she came up with a solution for us. So, I will be taking Zack to use the Trexo once per week for 6-8 weeks while Dale is having the time of his life too! I'm super excited and thankful to have this opportunity.
That being said, we're still trying to raise the money to get one for Zack to have at home that he can use EVERY DAY. The difference this would make in his life would be astounding.
Please, share our story. Donate if you can. Follow us on Facebook at www.facebook.com/twindayz
Thank you all so much for your support.
January 6, 2023
HAPPY NEW YEAR! With the new year brings new hope and new determination to get Zack the Trexo Robotics. On Facebook I am sharing one fact a day about how the Trexo would benefit Zack and why we need to get this piece of equipment. WE NEED YOUR HELP! (You can follow them on Facebook at: www.facebook.com/twindayz)
In December Zack and Dale went to their rehabilitation doctor (one of many appointments) and we were able to schedule a 1-hour appointment for January 23, 2023, with the Trexo Robotics program at Childrens of Alabama! We're excited, nervous, hopeful and part of me is already sad. I'm super excited that he gets to try it on and use it for about 45 minutes...essentially taking his very first steps. But I am also sad that we will have to walk away not knowing when or if we will get to use it again or if we'll ever raise the money to get him one. Childrens is a 4-hour one way drive for us, so using it often wouldn't be in the cards. maybe once per month if we were lucky enough to be able to get in to use it while there for another appointment.
Dale and Zack both had an appointment with their ENT Doctor in December also. That appointment took a turn we were not expecting. Dale and Zack will both be evaluated for hearing aids on 1/27/23. They strongly believe that Zack will be completely deaf between 6 and 8 years old and that he IS NOT a candidate for hearing aids because of his "behavior". By behavior they mean the way he moves his head back and forth and the way he seeks sensory input by beating his head against things. You're considered deaf at 90 decibels of (how loud something has to be in order for you to hear it), Zack is at 75 decibels and last year he was at 70 decibels. So, his hearing is getting worse. They anticipate him never developing any spoken language, and that when his hearing is completely gone the laughs, giggles, squeals and cries he does do now will also go with his hearing. Making him deaf and mute. But, I am once again putting my faith in to my God, the same faith that I know kept him alive, and praying that when he puts the hearing aids on that day, that he will realize he can hear us and not fight them.
Dale's hearing loss was mild and has now moved into the moderate range. Meaning he will be getting hearing aids at the same appointment as Zack. It is suspected by the ENT, his Speech Therapist and us, that the reason we cannot understand him when he speaks (ate the age of almost 4) is because of his hearing deficit. We're praying that the hearing aids will help him hear all of us more clearly and help his speech development. Prayers for the adjustment period of getting him to wear hearing aids would be greatly appreciated. I'm currently trying to get him to wear glasses and that is a challenge in itself.
December 12, 2022
We took Dale and Zack to 2 Christmas events over the weekend. The video I am posting is of me administering nighttime meds at one of the events to Zack who is in the wagon. We were not done playing yet, but scheduled meds had to be given.
WE HAVE BIG NEWS. Some changes were made at Zack's rehab medicine appointments last week. He started a new medication to hopefully help with his leg tightness. We knew that Childrens of Alabama had a medium sized Trexo Robotics in their therapy program...well...Zack gets to TRY IT ON and USE it for 45 minutes on January 23, 2023!
December 2, 2022
Everything that we do we incorporate exercises for Zack. Yes, he gets "down time", but even today at the Doctor, he was trying to get up and look around in his Wonderfold Wagon, so I grabbed his little hands, turned his little body to the right position, and helped him stand. I then help him by the hips so that he could stand up so tall. The look on his face is priceless. He loves being UP. He loves being on his feet and standing tall. His brain and body just don't work together in the right ways to allow it happen. But, with the right training they can learn to. The Trexo can provide so much of that training for him.
November 28, 2022
Hi everyone! We hope you had a great Thanksgiving. We stayed at home, ate a small dinner (yes Zack got turkey too. One of his Real Food Blends is turkey and sweet potatoes), and watched Christmas movies! It was a nice, stress free, peaceful day.
I've printed 50 fundraising packets. The packets include: a laminated flyer, a Help Hope Live letter, a letter from me, and the price breakdown for the Trexo. I've handed out 31 of the 50 to local businesses and asked them to post the flyer. Some have, and some I have not heard back from as to if they will or not. But I am hopeful.
Zack and Dale are doing wonderful. Happy as every. My beautiful spunky little boy. A lot of people keep asking me how I know ZACK wants the Trexo. I know because of the look on his face. The happiness that pours from him when he is upright. The undeniably desire to chase after his brother when is upright. The desire is there. The muscle strength and the know how are not. The Trexo would give him that.
Please check out our photo album for pictures from our Thanksgiving break from school!
November 16, 2022
Hey everyone! We're still holding out hope that we will raise the money for Zack's robot legs. I have printed flyers and letters along with price breakdown and have been reaching out to local businesses in our community. So far Inland Gas Station, Shutes Pecans, SweetCreek Farm Market, and Richie B's Pizza have all posted our flyers. Harley Davidson of Dothan is currently reviewing our information packet.
Because this fundraiser will follow Dale and Zack throughout their life, we're raising money for multiple things. The robot legs for Zack are the first priority. Other things that we will be raising money for are:
*Therapy Dog Training and Certification: $3000
*We've recently adopted a GoldenDoodle named Charlie
Any help with either of these things would be greatly appreciated. Just know that the robot legs are our first priority!
