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!