Zackariah and Dale
This is going to be combined fundraiser for Zack and Dale for any and all items they may need or want to make their lives more comfortable or to help the reach the goals of basic daily living. Here I will list the items needed, why they are needed and breakdown the cost for those items the best that I can; the way they are broken down for me.
September 23, 2023
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:
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
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.
Photo Galleries (6)
September 6, 2023
6 month donation jar at Richie B’s in Dothan, Al.
We thank each and every one of you! God Bless!
Richie B’s Donation Jar
June 11, 2023
Part 2 of the funds Harley Davidson raised for Zack's robot legs at Bike Night on 6/9/23. We're so thankful for all of you. God Bless.
Harley Davidson Dothan Bike Night 6/9/23
June 11, 2023
Thank you Harley Davidson of Dothan for having is and to all of those that donated! This is Part 1 of the donations.
Harley Davidson Bike Night 6/9/23