Searching...

No results found. Please try modifying your search.

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.

Updates (31)

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

Photo Galleries (7)

Loading Images

Guestbook

October 17, 2023

It takes a village, never stop. Hope always prevails.

Dianne Vitkus

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