Albinism journey- Wayde

06/17/2025

Wayde was at the ophthalmologist for another exam ., he had surgery April 11, 2024 to help slowing down his nystagmus by reattaching selected eye muscles to the eyeball.. he is scheduled for another surgery August 5 2025 .. eye recession bilateral surgery, which is detaching and reattaching muscles to change the alignment of the eyes , the surgery is used to correct strabismus the goal of the surgery is to maximize binocular function, which is basically both eyes working together and coordinating allowing for depth perception in a wider field of view. Right now his nullpoint is holding his head back to see out at the bottom of his eyes , overtime this will put strain and he will have nerve damage to his neck and spine .and to improve or prevent any current or future amblyopia development, which is lazy eye.. along with any improvement of vision. We get asked the same questions over and over again “can Wayde see at all” “what do the doctors say he sees” here’s what we say to that.. we found out wayde was having visual deficiencies at 3 months old so we’ve researched, prayed and continue to take him to all of his appointments and therapies . We don’t treat him any differently or love him any less regardless.
Proverbs 3:5-6 trust in the lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make your paths straight.
It will be a challenging few months to say the least! Bre is also scheduled a for a partial hysterectomy surgery July 7. keep their family in your prayers the next few months❤️🙏🏼

04/08/2025

If you could please vote for me for the super mom competition!
It would mean the world to us 🤍
You can vote every 24 hours!

One extraordinary mama will appear in Woman's World magazine, take home $20,000, and enjoy a weekend getaway in Napa Valley, California.

04/11/2024

Wayde FaceTime me and is glad to be home! Thank you for the prayers and continue to keep him in your prayers 💙✝️🙏🏼 God is so faithfuly good!

04/11/2024

Wayde is in phase 1 of recovery.. They gave him morphine fetalayl ,zofran and tylonol for pain.. please pray the Doctors and nurses have guidance, understanding, and knowledge over Wayde!

04/11/2024

this surgery just helps slow down to hopefully stop the involuntary eye movements, To help stop the shaking of his eyes. The Nystagmus . It shortened his eye muscles to align the correct way with his eyes , having this eye muscle surgery could potentially help his vioson and make his eyes stronger.

Waydes surgery started at 7:45am and will last until 9:20 AM.. I will try to keep everyone posted 
Please everyone stop what they’re doing and say a prayer… Heavenly Father, We come before You today with hearts full of trust and eyes fixed on Your loving kindness, to pray for the surgeons and medical staff attending to our precious Wayde. As these skilled hands prepare for the task ahead, we ask that You guide them with YYour wisdom and steady them with Your peace.

04/11/2024

9:05 update: Pediatric ophthalmologist Lawhon just came out Said Wayde did great everything went smooth. The Doctor is leaving his number, if they see something abnormal or if he has fever or anything arises.. Wayde is in phase 1 of recovery.. after Wayde wakes up, his eyes will be red they gave them eyedrops to put in his eyes 3x day for a week. He has an appointment to go back to see the doctor the beginning of the week. After this surgery he still has his astigmatism but not significant for glasses 🙏🏼✝️

Waydes surgery started at 7:45am and will last until 9:20 AM.. I will try to keep everyone posted 
Please everyone stop what they’re doing and say a prayer… Heavenly Father, We come before You today with hearts full of trust and eyes fixed on Your loving kindness, to pray for the surgeons and medical staff attending to our precious Wayde. As these skilled hands prepare for the task ahead, we ask that You guide them with YYour wisdom and steady them with Your peace.

04/11/2024

8:15am update…Dr Nelson with ENT just came out, they was performing the , laryngoscopy-bronchoscopy down Waydes throat to see if he was aspirating .There was blockage with fluid but Wayde clears it on his own! No Laryngeal Cleft!’l now on with the eye surgery 🙏🏼

Waydes surgery started at 7:45am and will last until 9:20 AM.. I will try to keep everyone posted 
Please everyone stop what they’re doing and say a prayer… Heavenly Father, We come before You today with hearts full of trust and eyes fixed on Your loving kindness, to pray for the surgeons and medical staff attending to our precious Wayde. As these skilled hands prepare for the task ahead, we ask that You guide them with YYour wisdom and steady them with Your peace.

04/11/2024

Waydes surgery started at 7:45am and will last until 9:20 AM.. I will try to keep everyone posted 
Please everyone stop what they’re doing and say a prayer… Heavenly Father, We come before You today with hearts full of trust and eyes fixed on Your loving kindness, to pray for the surgeons and medical staff attending to our precious Wayde. As these skilled hands prepare for the task ahead, we ask that You guide them with YYour wisdom and steady them with Your peace.

03/29/2024

Who doesn’t like to put on their sisters princess tiara!

02/29/2024

Been awhile since I’ve last updated. What a winter it has been. Every possible sickness has hit our household. Just days before Wayde’s eye muscle surgery which was suppose to take place February 1st. He got Covid. He was struggling pretty bad with his breathing multiple er and doctor visits. The children’s hospital has a policy no exceptions he could not have surgery with that. It was his eye doctors last surgery date before he retired. We were heartbroken and feeling so many emotions. They told us we would have to pretty much start the process over again and that left me feeling so so heartbroken and hopeless. After talking with the nurse who scheduled for that eye doctor she told me that that the new eye doctors nurse scheduler would give me a call after 21 days. (Due to Covid and coughing it’s protocol to wait because it takes infants lungs that long for the inflammation to go down). Long story short he’s better now finally! And we go see his new eye doctor Friday march 1st. Looking forward to meeting him and getting the ball rolling again!!

Wednesdays are Wayde’s speech therapy and he continues 2 times a month with help me grow his team is absolutely wonderful!! A early intervention specialist, physical therapist, service coordinator, and his vision specialist!!

01/09/2024

Today is a big day for Mr Wayde.. prayers for us as we travel to Akron! He sees ENT in the am and afternoon his pediatric eye doctor to discuss his surgery (which is February 1st.) Wayde will be having eye muscle strength surgery.

Wayde’s has the following: (vision)
- Infantile nystagmus syndrome
- albinism
- anomalous head position
- congenital hypoplasia of fovea centralis
- disorder of optic nerve
- periodic alternating nystagmus
- regular astigmatism of both eyes

This will be the 3rd ent doctor I have been too. Long story short we found the worlds best eye doctor who is an expert in nystagmus. We love him! We got the news he’s retiring in march and was devasted. He had one more opening for surgery and that’s our date the 1st. Now we just have to pray that Akron ent doctor also can do surgery on Wayde the first as well. Wayde is lip/tongue tied.

His ent at nationwide wanted to also check for laryngeal cleft. We have done feeding therapy weekly and he still has choking gagging episodes. We have also done a swallow study test on him and he penetrates his liquids/solids. He has been on famoditine since 2 weeks of age!

Prayers for my sweet happy boy 🫶🏼

11/29/2023

Hey everyone it's been awhile!! Tomorrow Wayde has feeding and occupational therapy. Every Thursday consists of feeding but now were throwing in his occupational as well. It's a big week this week, we also go back to nationwide to see the ENT to discuss what his next steps are. Ive been praying about which direction to go with his ties and im still so unsure! so if you all could think about us that would be greatly appreciated!!